Wednesday, 7 February 2018

What an ME Crash looks like

Hello my lovely loves,

Today I am firmly pushing myself out of my comfort zone, and showing you something that I never thought I would.
A while ago I asked if people would be interested in seeing what an ME energy crash and its subsequent recovery process looks like, and people overwhelmingly said yes.

I’m a little nervous, and I was going to try and schedule this as next month’s post, but now I’ve done it I kind of want to rip off the plaster and show it straight away.

I was massively inspired by the incredible Jennifer Brea and the other sufferers who created the film Unrest, which follows Jennifer’s struggle with ME/CFS.
She (and they) made it feel like it wasn’t just ok, but good and right to show people what I, and so many others, deal with on a regular basis.
And I’ve got to say, the respect I felt only increased as I attempted to document what happened during my last abrupt crash in December. It is incredibly difficult to be upfront and so, so honest, and still find the strength to carry on.

In the end I only filmed for four days of the two weeks of my crash and return to my normal levels, so it’s truly mind blowing that Jen and the other people in the film showed so much.

I showed the video to a select few for feedback on its completion, and there was a very unexpected response. (Although perhaps it shouldn’t have been.)
Pretty much everyone said it showed just how long it takes to recover.
They’re not wrong, but it made me realised how different my view of recovery time and theirs is so drastically different.
Two weeks is nothing. I was genuinely proud of it taking just two weeks to get back to my normal, if limited level.
I remember months and months of being stuck in stasis, when I hadn’t learned how to manage this condition, when it was so much worse.
And I’m far from the most severe of sufferers.

In a way that’s horrifying, but I hope that in others it might make it easier for you to watch what I’ve created.
It might not look it but this is better than it was.

I hope that this helps you understand a little more how it’s works, what it’s like, and why I try to keep so ruthlessly upbeat!

I can only apologise that it's shot in portrait mode - I obviously wasn't very well when I started to record footage, and by the time I realised I had done it wrong it was a little late! So I kept it all in portrait. Also, some people with slower internet speeds may find the visuals lag behind the sound towards the end of the video. Just reload or drag the slider along to a random point and it should sort itself out.

If you have questions you know where I am. 

If you want a greater explanation of how a crash feels to me then I’ve written a blog post here on the subject called The Good, The Bad, and The Payback. I love me a catchy title.

For the ME Association head here.

For Unrest on iTunes and Amazon head here and here, and head to Netflix to watch it on there.

Friday, 2 February 2018

Why "What if" makes no sense

Hello my lovely loves.

A friend recently said to me that it must be difficult knowing my life would have been so different if I hadn’t got ill, and it got me thinking.

Firstly, yes. Sometimes I look at people's photos online of their happy relationships, beautiful children, incredible career achievements and amazing trips abroad, and, as happy as I am for them (and I genuinely am), it’s still utterly excruciating. 
It hurts so much that my life is so different to what I thought it would be.

There have definitely been occasions where I wonder where I’d be now if I wasn’t sick, or even if I wasn’t housebound. Would I have met someone? Be having a family? Working at some amazing job? Going on my own adventures? And thinking about that, measuring myself to what might have been, and what others already have, is pretty soul destroying.

But there’s a problem with all of this.
Maybe I would have a beautiful, magical life where everything is sunshine and rainbows, but... I also could have been hit by lightning, run over by a bus, or fatally mauled in a freak llama-related incident.

Something people (myself included) tend to forget, is that just because things are bad now, doesn’t mean it would’ve been better if this one thing hadn’t happened.
It could also be as bad, if not worse than it is now. I could be dead; and then, even though all the things I want out of life seem so far away and unlikely, I definitely NEVER would have done them.
After all, there is no hope if you’re not here to have it.

The same holds true for the future. It’s so easy to assume that because you have an illness you never expected or planned for, it must mean that everything in the future will be worse than it would have been. But... why should that be true?
It certainly feels true sometimes, I’m not arguing with that, but just because something feels true doesn’t mean it is.
We don’t know what will happen. That can be really scary.
But it also means that maybe there will still be sunshine and rainbows, even if right now it’s bloody tipping it down.

Everyone has their ways of coping with the What Ifs. Mourning the life you had, or might’ve had, is itself a very important step. I know some people become very religious, some practise yoga, become activists, or just get very, very angry. Those are all valid, and if they help you then that’s all anyone could ask for.
But I imagine that I’ve narrowly avoided an ignominious end at the hands (or hooves) of a pack of rabid llamas. 
Maybe you should give it a try.