This is Me

It’s been a while since I have posted a blog...my greatest apologies! My health has not been great so I’m trying to start again this new year with my second week of antibiotics on top of prophylactic antibiotics. (I’ve been on the latter for a while to try and break the cycle of UTIs that I get if I stop taking them). New year, new start and all that jazz.

How are you meant to make a ‘new start’ when it’s a struggle to be productive in your day due to crippling exhaustion and pain that reaches new heights everyday? In other people’s worlds it maybe another set of illnesses that are unforgiving or even stop you from living. Back in the beginning of my ME, I very quickly lost everything: the ability to speak, move or eat. I existed rather than lived. I have been so used to living in a bubble of disappointment, where everything you dreamt of being able to do by a certain date never happened.

In the past three years, my health has started finally improving. Yes, I’m still very unwell but I’m able to start living a little bit. Even though I pay greatly for the privilege, the fulfilment is priceless. For a while I wondered whether I should be pushing myself to extremes to do something. Life maybe precious, but if you are not able to enjoy it then what is the gain?

Then a trailer came along for a new film called The Greatest Showman. It showed all the people that were different to the average coming together to make a show. The very start of show business! I am glossing over all the politics of it and instead focusing on the main ensemble song ‘This is Me’. In this song the lyrics are so incredible and raw but are exactly what I needed to hear. ‘Look out cos here I come, and I’m marching out to the beat of drum I am not scared to be seen, I make no apology, this is me.’

It resonates with every person, from teenagers trying to look like everybody else, to young people and adults all trying to fit into the status quo or what is en vogue. However, the words gave me a different inspiration: why should I be basing my judgements on what I should be doing on what I think others are thinking of what I do? Instead, I should be staying true to myself and making the bold statement in all I do that this is me.

So when we are looking at a new year, new start, for people with different chronic or acute conditions the point is you need to recognise you are good enough as you are in whatever capacity you are at. The fact that you are here means you are more than halfway there. Being a good person is the other part and only you can judge your way in that. No one knows what you go through and what you are up to doing. Be true to who you are.

So being true to who I am means that I am going to do a little bit more hibernating until I’ve cleared myself of some of these annoying infections then I’m going to start making memories with my family. The most important thing is just because I’ve got M.E does not mean that it defines who I am. For I am ‘me’ without any dot in the way.

Here is just a little poem I wrote to bring in the new year. It is about the brain fog and struggle of dealing with new year.

The truth of a chronically ill New Year

A post seems so simple

So easy it’s there

I look at it, glance at it and even stare

But the words don’t formulate

They are stuck in my mind

For only God to find.

I memorise it and try to type

To tell you all about a Happy New Year

Christmas, a birthday, I want you to hear

But the words don’t formulate

They are stuck in my mind

Amongst the new ideas that only God will find

Frantically I try to get my brain to just process

It is so easy, it’s there, I just need it to focus

But focussing doesn’t seem to answer the riddle

As to why I’m stuck here, right in the middle

Between the broken record that seems to be my brain

And not being able to work to my full potential is driving me insane

That life that I had in previous days

Seems hidden inside a summer haze

Where I am living inside a snow globe

I’m watching from my world of one room

I will be with you I promise, it really will be soon

Once my brain comes back to the surface

Once my mind can type the words that I think

Everything will come back together and work in sync

Until I get over the Christmas joy, the love, the laughter that drains my mind and body

I will be back with new ideas, new things to see

But for now I say Happy New Year to you all

May you be as well as possible and continue the fight

With every bit of your might.

(Jessica Taylor-Bearman)

 

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