Pointe shoes and pelvic pain

The stage is set. The audience hush to give their full attention. The anticipation and expectation is set high. One last check to make sure you’re ready for action. The adrenaline pulses through your body and the nerves fizzle away. One last deep breath with eyes closed. Two shallow bounces and a drag run to your place. Everything is ready.

Your eyes open, expecting to be met by an orange hue of light but there’s nothing. You dare to look around, fearing a technical glitch and that the lights will rise, revealing your break in position. Your heart pounds but there is nothing. You look around to the people you usually share the stage with but it’s empty. A glance towards the wings reveals that you’re alone. But where has everyone gone?

The adrenaline turns to fear and loneliness. The darkness plays tricks with your eyes and your vision begins to fog. Your poise turns to a hunched ball on the floor and the tears turn to waterfalls. You’re about to give up.

Suddenly, a muffled voice cuts through the silence and catches your attention. You walk forward, blurry eyed and bewildered. One person has become your audience and they are cheering you on.

Yes, the lights are down and the stage is lonely but there is someone who sees you- a reason to keep going. You dry your eyes, brush down your leotard and take your position. It wasn’t the way you’d rehearsed it but you knew you could still make it work.

It’s so important that when things get really dark, you keep dancing because there is always someone cheering you on, even in your darkest hour. Remember, you can make your own music and dance to your own beat.

💛

Just add water

Having been off for 6 weeks, there are certain things that people expect from you; to feel refreshed, to feel revived, to feel energised, to feel excited…

As a person with 2 invisible illnesses, I suffer with crippling fatigue and I can safely say, upon my return to work today, I felt none of these things!

When I pictured my six weeks off at the end of last term, I saw myself relaxing in the sun, gardening, visiting ‘National Trust’ parks with my new puppy, being pro active and planning lessons- almost for fun, organising the dreaded cupboard under the stairs and being a domesticated goddess/ successful dog Mum!

The hopes were set high but the reality was far from it. Here’s what I really did with my 6 weeks of fun- I laid on my sofa with my hot water bottle strapped to me and I stressed over being stressed.

I didn’t even have the energy to water my plants and the worst thing about this is that I had noticed about half way through the time off that they were looking a little parched and I knew it was a small job that needed doing pretty urgently. That was 3 weeks ago. Today, they’re still gasping and beginning to shrivel.

While I know this is not good (and since starting this post, I have started reviving said plants!) I began thinking that it would be so much easier if plants could just water themselves! After all, they need water to survive! If my pup was left to her own devices, she’d seek out food and water where she could, so why can’t plants? Surely something so important can’t be dependable on something or someone else?

And then it occurred to me that we need to learn to water ourselves. Like many of the chronic community, I’ve spent years explaining my condition and expecting people to understand completely and support me when I need it and although there have been times where I’ve been heard, only my nearest and dearest- those who really look at me- are able to see when my leaves are beginning to shrivel and brown.

We cant always rely on others to water us, we have to learn to do this ourselves or we won’t make it because everyone knows flowers don’t bloom without water and we have the right to blossom like everyone else.

So here’s my message to you- what kind of watering do you need? A hot bath once a week? A night off from taking work home? A cup of tea when maybe you should be doing the housework? Water yourself, as much as YOU need.

I’m off to fill up my watering can!

💛

Learning from Lewis

It has taken me hours to write this post. Today marks the two year anniversary of the death of my very special cousin, Lewis.

Lewis was 21 when he slipped away from us. He died 5 days before his 22nd birthday after a three month battle with pneumonia, among many other complications. When he passed, he left behind two parents and a younger brother, who had devoted their lives to making sure he had the absolute best available to him. Lewis was born prematurely and consequently had very severe special needs. He was non-verbal, fed through a tube in his tummy and had spent his childhood in and out of hospitals, including Great Ormond Street, for many different health problems. He defied death so many times and showed his stubborn genes.

Despite all of this, Lewis had the most amazing life. He loved and was so loved by everyone who met him. His funeral was filled with hundreds of people whose lives Lewis had touched. I always described him as my inspiration and it is still true today, for so many different reasons.

There were nearly 4 years between Lewis and I however I spent most of my childhood visiting him and my other cousins. We are a very close knit family and more like brothers and sisters than cousins. I always looked forward to spending time with Lewis because I loved how we could communicate through so much more than speech. He had the most amazing smile and infectious laugh. He was so clever and eager to show things that he had learnt. He would always take me by the hand and lead me around his house to show me the light switch that he’d learnt to switch, the doors he’d learnt to slam and the ball he’d managed to spin effortlessly between two fingers.

He loved cars. He had collected what must be around 1,000 cars in his lifetime and each one had gone under careful, close inspection. His most favourite was ‘Yellow Car’. He has it with him now but us cousins have each got one similar yellow car from his collection. Yellow was his favourite and now it is mine. I never saw the link before, but here it is, staring me in the face. Yellow is the colour of Endometriosis fighters. Yellow is the colour of strength and he was the strongest little man I’ve ever known.

Along with his love of cars, when Lewis was younger, he adored helium balloons. He would play with them and they would make him screech with laughter. Balloons became something I associated with him and since he has gone, I have seen so many balloons floating in the sky, I can hardly believe it myself. The first was when I visited his beautiful grave, a few months after he had gone. The next was a red hot air balloon that hovered over my flat, during one of my lowest times. It was there every morning for over a week, giving me the strength to get out of bed. The last time was a fairly recent one. I was having one of those days at work and I was on playground duty, contemplating whether I could do this any more. I looked across the playground to children shouting and pointing to the sky and my mouth opened. A balloon floated across the sky and over the school. I knew this was a reminder to keep going.

I wanted to know more about Lewis from an early age. I always knew I wanted to work with children just like Lewis so when I was at school, I spent two weeks on work experience at his specialist school. I had the most amazing time and I knew that this was my calling. I then went on to train to be a teacher with a specialism in special educational needs.

Although I now work in a mainstream school, I have experienced teaching children with a variety of different needs in every class I have had and I thank Lewis every day for this because without him there is no way I would be doing what I do. He was the reason and he still is.

There are so many things I want to say about him but I can’t find the words. I think of him every day and I miss him today as much as I did when I answered the phonecall I’d been dreading. I can still feel his hand in mine, the way it always was when I went to visit and the way it was when I said goodbye to him.

I know that people believe different things about what happens when loved ones pass away. I take great comfort in the little things that remind me of him, whether it really is him or not. Everyone can learn a little something from Lewis. You may not be able to change your genetics but you can change your outlook on life. However tough it gets, whatever life throws at you, try to find something that will make you smile and laugh hysterically.

Don’t let that little yellow balloon float away from you, grab the string and let it take you somewhere. The only way is up, if you let it.

💛

A new journey

6 years ago, I was diagnosed with Endometriosis after nearly 7 years of being told by doctors that it was ‘all in my head’- a phrase that far too many women and girls hear on a daily basis.

Yesterday I underwent my third surgery for excision. The results showed that it had spread like wildfire. Some would say how awful, and I suppose they would be kinda right but the first thing I felt (other than sick and dizzy!) was relief. I was relieved that there was something there, yet again, warranting the excruciating pain and fatigue I’d been feeling for over two years.

Today I’m laying in my bed, drugged up on pain meds and contemplating what my future looks like. I’ve known for years that I have a chronic illness but it’s only now that I’m realising what chronic means. This is never going to go away and I could spend the rest of my life moping about it… or I could do something. So here I am, starting my new journey, documenting the struggles and successes of my invisible illness. I’m not really sure what I want to achieve but I hope that others can read and relate and join the fight.

All Endo-warriors will know that it’s a less than glamorous illness so I hope to share my experiences and turn them into something relatable and slightly comical!

Keep a look out for my post-op posts but in the meantime, I must dash-it’s going to take me half an hour to hoist myself out of bed to get to the loo in time!

💛