The Blog

Living With Chronic Illness

My reality of being morale boosted, bathed (sweet memories), packed with vitamins and every Deliciously Ella/Hemsley Hemsley recipe going, provided stark comparison to the desperate stories of isolation and loneliness that I discovered.

Bikram and Spin, side veg instead of fries; oh cooey, that was me (well, mostly me. Thin crust pizza? Shepherd's pie? Move aside ladies).

Yes, it's been 11 months since I learnt that ME, a debilitating chronic illness, can strike the most seemingly healthy.

It's been 11 months since I was hit by fatigue, incessant aching and the feeling that I'm more often than not peering through a red wine hangover. (The very same red wine hangover that I've, somewhat ironically, avoided since first unfortunate experience at Tabby Cooper's 15th birthday party).

In the past year a previously abandoned, but oh-so-oversized-and-comfortable, Celine Dion 'Let's Talk About Love' t-shirt has been worn far more than should ever be allowed.

It was in this fetching ensemble that, after a month of mostly bed bound, I did what the Doc warned against. I Googled.

My reality of being morale boosted, bathed (sweet memories), packed with vitamins and every Deliciously Ella/Hemsley Hemsley recipe going, provided stark comparison to the desperate stories of isolation and loneliness that I discovered.

Here was the proof that 94% of ME sufferers have experienced their condition being disbelieved. 94%. Suddenly, hanging out with Celine didn't seem so bad.

In fact, I've never felt so lucky.

On the day of diagnosis my reaction was, "but what will people think?". And I wasn't thinking of the wider world or the people I was yet to meet, but my close friends, boyfriend, family, work mates, distant friends, extended family.

I was desperate for them to believe that yes, I may have been known to exaggerate for excellent dramatic effect at times, but now I really was as unwell as I said. I didn't want to be thought of as lazy or pathetic. And, despite his silver charm, I really did not want to be stuck in bed watching Phillip Schofield each morning.

I cannot explain the relief that came with the reaction that I received. I struggled to speak to too many people, but with the power of WhatsApp, emoji littered word travelled fast. And with it kindness came quickly.

From quiet visitors, patience in abundance, a chair pulled out and placed in the kitchen in advance of a family filled Sunday lunch, a pal who just knew that I just couldn't abide knowing that my knickers had been tidied into my sock drawer, so without a word reorganised the lot, and weeping phone calls

answered at 4am. I so deeply appreciated it all.

There were points were I questioned my self worth. Not in a '"woe is me" way (still feeling incredibly grateful all the while). But I wasn't Lizzie at work offering ideas. I had no energy to be Lizzie the friend making a joke. I wasn't Lizzie the girlfriend, who could so easily string together a sentence about my day. I wasn't even Lizzie the daughter that could make an (admittedly terrible) cup of tea.

But it was my relationships that, despite GP's advice to "re-evaluate my goals" and "restrict activity", reminded me that that which made me 'me', hadn't been derailed.

And yes, it may sound hippy. But that feeling of belonging is just so important. And those around me made me feel like I did still belong, just as I was. Celine and all.

I realised that happiness isn't rooted in a life lived at 110mph, with an impressive to do list; it's a meaningful connection to those around you. And that connection is a basic human need, essential to our wellbeing.

In 2015 I became most concerned with all the health tips and tricks. Drink water. Scrape your tongue. Brush upwards. Stretch daily. Twice. Three times. Count backwards from 10. Breathe. Breathe with your legs in the air. Breathe upside down. Breathe and think of nothing. Everything. Eat all things yellow. But not bananas. Or dairy. Whatever you do, avoid the sugar.

But I'm nearly a year on and there's one thing that I've really learnt and really felt; that whether basking in all of your Celine Dion glory or working a 14-hour day, isolation isn't ok.

Every single person is going through something, but we're all so busy doing, we're hardly ever listening. And it's just so easy to lift somebodies morning or brighten an afternoon.

It's those smallest of small things, that podcast sent, that time we took a drive with the windows and top down so that I felt some fresh air and freedom (despite coming to a standstill on a nondescript part of the M25), a no-reply-needed text, an unexpected card, that have made this experience feel at times like it could be an adventure.

So I know you're really busy. I really, really do. But gosh there's so much to be said for stopping, even just a moment, saying hi, asking and listening. (And actually listening. No checking your Snapchat at the same time.)

In science, in medicine, I'm no expert. But take it from someone that can vouch for the effectiveness of a friendly face and a cup of tea. Living your best, happy self isn't easily achieved alone. Because it's those underwear folding, windows down, shepherd's pie savoring moments that remind me on even the most challenging of days; I'm not 'living with chronic illness'. I'm living.