Hello, lovelies! I wanted to share a great video, where, very kindly, I get a mention. (Fame at last!) Do check out the Parkinson’s Wiggle Project. Here is the video link.

Not to take up too much of your time but I have a new project to share! If you like love, humour and feel-good stuff consider popping over to Love Over Latte.

In my life, I have had several brushes with death; dysentery, malaria, and childbirth. And weirdly, these things weren’t as terrifying as they should have been. Perhaps because I was so caught in the moment: Trying to alert the midwife I wasn’t feeling very well while losing 4 pints of blood. Or hallucinating wildly during an especially vicious bout of malaria. I was a touch too busy to be afraid.

But now I have a chronic illness and lots of time to think about it…I’m terrified.

I have a sneaking suspicion that we humans are damn good at being brave in an acute situation but the real challenge is long-term. How long can we maintain the ‘Yes, I’m finnnnnee’?

Parkinson’s tends to muddle along day to day. Even with its subtle changes generally, you know what you are getting in any given scenario. Until it does something wild and gives you the gut-wrenching shits of terror. There are those moments that completely throw your equilibrium and confidence that you are coping with the disease.

If you experience swallowing issues it’s likely you are pretty practised at managing until you have the blue-in-the-face-suffocating-choke moment. Not breathing, no concept if your slow, malfunctioning swallow mechanism will correct and allow you to carry on living.

Or the getting stuck. Just nothing moving, a temporary paralysis. Only it bloody doesn’t feel temporary when you are lying on your floor at 3 am wondering if anytime in the next hours your body will move again so you can walk, sit and shit.

That thing crawling towards you along the bed, grinding maw of teeth, dripping blackness, screaming horror. Not knowing if it’s another nightmare or a hallucination or this time, it’s actually real.

These moments are panic-inducing and leave us exhausted with fear. Not only that but we slide into despondency about the progression of the disease.

It’s all so very exhausting.

But the problem is as much as we want to yell ‘Oh. do just fuck OFFFFF’ There isn’t enough energy or fucks in the universe to cover how we feel.

One of the difficulties of dealing with fear is it uses a lot of our resources. Fear is visceral not only an intense emotional tornado but physically pulverising. Provoking all our flight/fight responses and quite frankly making you feel appalling.

I think we try to convince ourselves that we are coping and have the disease under control but that is at odds with reality. Illness always has us under its control - until we either heal or die. And there is the deeper fear trigger.

Even supposing you come to term with the death bit, there is the leaving loved ones behind, the caring required before then, the general burden of guilt and so on. Fear leaks out of all corners with chronic illness. Fear is our permanent filter. Like wearing sunglasses indoors. It darkens our realities, our hope and the world around us.

But, and this is the important bit, you (we) need to keep going. Because the fear is always bigger, nastier and smellier in our heads than it is in reality. Take the risk that it will be ok and tell it to bugger off.

When you get diagnosed it would be great to have a handbook entitled ‘All The Shit Bits About This Disease’. The handbook could be a support guide for dealing with fear and all other emotional terrors. If I wrote the book I’d start with a list of swear words and phrases you will find yourself wishing you knew as you progress through the illness. Chapter two would be a litany of statements assuring you it’s ok to want to scream, cry and feel like shit about everything.

Chapter three would probably be a list of reasonably priced wines.

With Love

Emma xxx