Sweet love.

It was late.

The lights were dimmed.

I stared at him. He stared right back.

It was always special, but something felt different tonight.

He leaned in and I felt my hands get clammy.

Up close his eyes were huge.

The blood was rushing to my head, all thoughts gone.

The butterflies were dancing.

Was this it;

The way true love showed?

My heart was racing, a din in my ears.

But alas no,

I had merely mistaken love

for a hypo.

 

 

Photo by Laura Ockel on Unsplash.

A lesson in vulnerability

Or, that time I mentioned my wheezy-hamster-lungs in an interview.

Unsurprisingly having a life-shortening illness can make you feel a tad vulnerable at times. It can also make you feel like a superhero when you defy the odds.

But there’s one context that has always made me feel more vulnerable about having Cystic Fibrosis than any other.

A job interview.

The normal tension, adrenaline and uncertainty of an interview is shadowed by one little voice in the back of my head asking ‘but when do I tell them?’

An admission that you’re essentially a walking pharmacy, reliant on multiple medications to survive, need a dedicated diary to keep up with doctor appointments and will likely have to be hospitalised for a week or two a year, is not traditionally  viewed as a strength in the professional world.

And yet, revealing my CF made me feel stronger and more assertive than perhaps any other single statement I made during a recent interview.

And I got the job.

In fact, I have now discussed CF in three job interviews this year. Two for freelance positions and one permanent. I was offered all three roles.

I don’t share this as an example for other people with chronic illness to emulate. I am in no position to recommend anything, and I am well aware of the serious emotional and financial risks of disclosing an illness in a professional context.

All I can share is my own experience. Five years ago I would never have been so open about my CF. I even let CF be the reason I didn’t apply for several opportunities; much as I regret it now, I accept it’s what I was comfortable with back then.

I’ve always been frank with people who know me and prefer to joke about life with CF than to not talk about it at all.  It is an attitude that I have tried to translate to my professional life too.

So over the course of this year I have – unconsciously at first – dared myself to be more open than I ever have about this strange life I live as a medical grade drugs mule. CF has a curious ability to scare you and make you brave simultaneously, and I relish the lessons it’s taught me.

A few months ago I turned up on the first day of a freelance job with a 10 inch plastic cannula tube sticking out my arm, as I finished the last couple of days of an intravenous antibiotics course.

I was recovered and able to do the work, but in previous years I would have fretted and worried about this unchangeable fact of life. No doubt making myself feel worse in the process and less focused on the job at hand.

Instead by being honest, matter-of-fact and hopefully professional about it, it became a non-event. For me at least, I never did check whether my line manager was squeamish.

That wellworn adage, misattributed to Marilyn Monroe on many an insta meme, ‘if you can’t handle me at my worst, you don’t deserve me at my best’ starts to ring true. But only partially, as I don’t think people with a chronic condition should believe it represents the worst of them, far from it!

Whether the issue at hand is an illness or any other type of imperfect truth; it is a truth. And as I have learnt, it’s one that can be an asset, a vulnerability and a triviality all at the same time.

So take me as I am: war-chest of antibiotics included.

 

 

 

 

 

 

Health is everything

Good health is everything. So some people believe.

 

As humans  we structure our needs in that well-known colloquialism of ‘[insert life changing challenge e.g. having no job or experiencing a divorce] …but hey at least I have my health’.

 

I would argue that having no job or experiencing the break up of a lifelong relationship are often far more significant events than experiencing poor health, but as a society good health is so fundamentally cherished and important that the loss of it trumps most other misfortunes.

 

My issue with that idea is not just because it is totally subjective (someone’s poor health could be frequent headaches vs another’s experience of a life-threatening disease). But I also believe that some degree of poor health can be an enormously influential motivation to improve health. A motivation, that many people without an illness and those who take their good health for granted, do not have.

 

So I do believe that health is everything, but perhaps not in the same way that traditional phrase can imply, and I certainly don’t believe the opposite logic that poor health is worse than everything else life throws at you.

 

I’m aware that some aspects of this belief are controversial. Especially when poor health in its various forms kills people. It will probably kill me one day. But as a person with a chronic illness, I passionately believe I have gained things through having CF that I would unlikely have otherwise had.

 

Hopes, dreams, and a perspective that I fear would have passed me by if CF didn’t force me to slow down at times. A wish to be more grateful for the good happenings in life and a slow-burning determination to achieve what I care about, that personally, I think my CF is partially responsible for.

 

Some of the most inspiring, compassionate and intelligent people I have ever met live with poor health. I do not believe it is a coincidence.

 

Health is not a dichotomy.  Not everything that results from poor health is bad, and not all that comes from good health is instantly positive.

No matter how difficult or uncertain life can sometimes be with a lifelong illness, had I lived a life with perfect health I would simply not be me.

An appeal at the eleventh hour

It’s that time of year again.

Oh, you thought I meant the election?

Well, yes. But it’s also around about the time of year I end up in hospital for a 14 day course of intravenous antibiotics to treat the underlying and continuous infection in my lungs.

By Cystic Fibrosis standards this is nothing; it’s a walk in the park. I’m reminded of this every time I meet my fellow patients in hospital.

I was also in hospital during the Brexit vote last year (and yes, I escaped to go back home and vote). It occurred to me that I’ve probably been in hospital for two of the most significant political decisions in a generation.

Despite voting remain, I understand valid political arguments for leaving the EU. But when I woke up in my squeaky hospital bed on June 24th 2016, I felt nothing but shame and sadness.  Every single nurse who came to see me that day was an EU citizen: Spanish, Polish, Portuguese and one Italian. The NHS – the 5th biggest employer in the world – could not survive without them, and they were made to feel unwelcome in this country.

This year, there is a much more complex decision to be made, in the sense that there is no simple YES or NO to tick on a ballot box.

But one issue for me is startlingly straightforward; how much we need our national health service.

Dr Archie Norman was one of the founding members of the Cystic Fibrosis Trust, who passed away earlier this year aged 104. This is what he had to say when discussing the  great milestones of CF treatment in his lifetime. “Last, but not least, was the advent of the National Health Service (NHS) in 1948 – we could prescribe drugs without worrying whether the family could afford them, a matter of immense importance in a persistent long-term disease such as cystic fibrosis.”

There may be many countries in the world that sadly can’t afford a health service such as ours, but we – as the 5th or 9th biggest economy in the world, depending on where you get your statistics- are not one of those countries. And there’s no doubt that the future of the NHS depends on our vote tomorrow.

I wouldn’t be here without it, I am sure. There are 15 million people in the UK classed as having a chronic illness, and for so many of them it is more than a figurative lifeline. We owe so much to the system and the people within it that, despite its flaws, help us live healthier, happier, longer lives.

I won’t argue that any one party has got all the answers at this election. The issues are complex and the solutions expensive, but there is no denying that a continued Tory government will be the end of the NHS.

Please, don’t vote for that. Many of us have a lot to lose.

When the brainfog hits you bad; a specialist’s perspective

I would expect, that even if you aren’t a part of the niche, tight-knit community of CF-related diabetics like me*, you will have experienced brain fog at some point in your professional career.  Or cognitive dysfunction, to give it its scientific name.

Maybe it was a critical moment, in a big meeting as you pitched the incredible, life-changing, oh-no-you-just-forgot-what-it-is, to a potential client or investor. Perhaps it was in the middle of an interview for a coveted job.

Or a more mundane, everyday kind of situation. When you forgot something mid-sentence on a phonecall, or forgot your password, fingers hovering over the keys as you tried to remember which dead pet name now makes up part of your obscure login.

We’ve all had it, often at the worst moments and it can be phenomenally irritating. It is also perhaps, a leveller, that makes even the most high-powered businessperson simply human for a moment.

According to Google, people search for all kinds of queries related to brain fog. We want to know what causes it, what it feels like, what foods make it worse (gluten, apparently), what kind of doctor can ‘treat’ it (now that is one kind of doctor I’d love to see), how long it lasts and more.

But is there anything good about brain fog? Perhaps so.

I am particularly intrigued by the phenomenon and that is because I experience a certain, specialist type of brain fog.  You might know it as diabetic hypoglycemia, or to give it its common name ‘a hypo’.

A hypo is a little different for everyone with diabetes, but let me tell you how it feels for me: the area around my mouth starts to feel a little numb, my lips tingle. I become very aware that I am trying to remember what it normally feels like in my head. I know something has changed. It goes quiet outside as I concentrate on working out what is happening. I always come to the same conclusion; as if by magic, some little stealth pixie must have stepped into my head and replaced my brain with styrofoam. I start to sweat a little, and then the penny drops. A hypo has hit.

At different times depending on how severe the hypo was, I’ve forgotten what I was saying, or doing, and on one or two occasions I’ve forgotten how to spell my name.

I don’t want to trivialise hypoglycemia as it can lead to life-threatening situations when not controlled. But having developed diabetes aged 21 I can remember life before hypos very clearly. And in pursuit of a silver lining in everything; I can say that the aftermath of a hypo can make me feel more alive.

That sudden absence of everything in my head and the instant switch into survival mode a hypo brings is extraordinary. Life becomes very simple and two dimensional. It gives me such an extreme respect for my brain and my body.

When the hypo is over I feel so grateful to have made it through. That absence of feeling is a reminder of how much is there when my body returns to normal.

In much the same way that brain fog is often just a side-effect of the human body going about its complex, messy, incredible business.

So cheers to that.

 

*A not well known, but common complication of Cystic Fibrosis in adults is CF-related diabetes. This is a bit of hybrid beast that is neither type 1 or 2, but bears more resemblance to type 1 and is usually treated with insulin. 

Who made my clothes?

I recently blogged about my big-deal-but-not-really-a-big-deal decision not to buy any clothes for a year.

If I were the kind of person who didn’t like clothes or was not easily swept up in the whispers of commoditized fast fashion that would not be worth telling you about. But I am, or was, that kind of person.

As I have previously said, I think expressing yourself through the clothes you wear is a wonderful thing. It just becomes a tad more complex of an issue when you discover that it takes 2,700 litres of water to produce one cotton t-shirt.

For the English among us, that’s 4,751 pint glasses of water.

If like in the 1800s we all wore one shirt per year*, perhaps that would be a sensible ratio of resources to output and no one would be getting so hot under the collar (I’m here all week) about the impact the fashion industry is having on climate change.

And that is the essence of fast fashion; more. More of the same, but in 5 different colours. More tops like last year but this time with more ruffles around the collar. More heels because the last pair broke and you might as well buy two pairs since you’re here anyway.

And so the cycle continues; more becomes more water, more cotton, more oil and more trees.

Which is why in my quest to buy better quality and far fewer clothes in the future, I’ve been exploring some of the amazing initiatives that are taking place to make fashion a much cooler, more sustainable industry.

My old uni, The University of Exeter and Fashion Revolution, an organisation set up to do exactly what it sounds like, have created a (free) short course designed to take the user on a journey of discovery about where their clothes really come from. It doesn’t start until 26th June and takes only 4 hours a week.

I’m really interested to find out more about the people, methods both good and bad, and the material that creates some of the clothes in my wardrobe. It means that when I shop in the future I will start to understand the places to go, the materials to look for and the true cost of what I’m wearing. You can sign up here if the idea excites you, too.

And to end with a piece of highly relevant trivia, did you know that H&M has created a ballgown entirely out of waste marine plastic for their 2017 Conscious collection? Well you do now, and apparently the material  is ‘unlike other plastic-based fabrics, it’s supersoft and can adapt to almost anything you want to make, from jeans to cocktail dresses.’

Which gives me hope, because if being good can also mean looking good, H&M may just be on the cusp of unlocking a new, and rather large customerbase.

 

*Completely uncited but in some cases probably quite accurate statement, merely used to make a point about modern shopping habits.

Slowing down fashion: a year-long experiment

I like clothes. Rather a lot. They’re beautiful, versatile, and help you be anyone you want to be. Or at least, that’s what they whisper at you from the mirror of the dressing room as you try them on.

Which is why the conclusion I came to last month, to try not to buy any new clothes for a year, felt like a dramatic one. And certainly left me wondering how many new hobbies I’d need to pick up the slack on all the time I used to spend shopping.

When I told my boyfriend however, he seemed nonplussed. This is the same guy who subsisted in the same pair of black skinny jeans for 3 years before I met him, so I may have been pitching to the wrong audience. While I am well aware that excessive shopping is not a vice that plagues everyone (and I salute you for it), it is a preoccupation of more than a few friends and family; and indeed a large chunk of the Western world.

So why the big gesture? Well, there’s no singular reason and it was not a sudden revelation. There has been a sickly feeling in my stomach whenever I’ve bought clothes for a while now. I know there will be some caveats and rules I’ll need to establish; what about special occasions like my brother’s wedding, or when all my socks inevitably have holes in?

So while I am still working out the details, the need for change is obvious. According to the Economist, global clothing production doubled from 2000 to 2014. That can’t have been me doing all the buying. Every year more clothes are being made, and more are being thrown away sooner. Again from the Economist; Zara used to make do with a handful of yearly collections, now they have twenty.

When you compound that with another stat, from McKinsey – that simply producing 1kg of fabric generates on average 23kg of greenhouse gases – the sickly feeling gets a little stronger.

Must looking good really necessitate killing the planet?

I don’t think there’s a single answer to that question, and I don’t want to speak for others. Personally I get frustrated with clothes that are better suited to the dust bin after only a year of wear, and I get angry with myself for so easily falling prey to  promotion after promotion in the sales. But I don’t think liking clothes is wrong.

What about the confidence-boosting, the creativity, the buying power of fashion, which all bring immeasurable positives. Charities like SmartWorks show the difference a good outfit and the right training can do for women out of work. But there has to be a better way to do this. The opportunity is ripe for more brands to tackle clothing production and consumption in a profitable and sustainable way. Following in the footsteps of brands like Patagonia, and encouraging more people to make do with fewer, higher-quality items of clothing is surely the way forward.

This is after all a personal experiment and I’m doing it to learn. I want to understand what really goes into the process of making clothes; the environmental and the human cost. Yesterday was the anniversary of the 2013 Rana Plaza disaster, one of the most shameful days in the history of the fashion industry.  I’d like to better understand the psychology of it too; the reasons why new clothes have been so important to my self-esteem and why my choice of outfit is as important to some as the words I say in a meeting.

12 months from now I think I’ll still like clothes, but maybe I’ll respect them too.