Dear Bug… What a Difference a Decade Makes

I could have quite easily written a blog on this year, because so much of my life has changed in that time. As we come to the end of a decade, I thought it was a perfect time to reflect on more than just a year but how much my whole world has changed.

A decade ago, I was completely bed bound, and crippled in searing agony. It hurt to think and at times it hurt to breathe. I spent the years going in between medical emergency after medical emergency. I lived life on the edge. I was living in hospital, trapped in a bed and told that my life would always have hard boundaries that would stop me from living.

The M.E. Monster seeped through every cell of my body, poisoning me. I had faced doctor after doctor, who did not understand what M.E. was, let alone the severest form. I was told by an unhelpful doctor that due to a mishap with a previous scan, I now had bones that were a hundred years old and would never get better.

My life was filled with restrictions, I was unable to leave my room. Everything was against me. When I returned home, life seemed to be even more uncertain. I suffered with many different horrendous infections and other emergencies, on a daily basis. I lived in a room that I never escaped from.

For some reason, I held onto this idea that there was a future beyond this. That one day I would burst out of the cocoon that had restricted so much of my life. I couldn’t believe that there would be no way out, I couldn’t deal with that idea.

In the years to come, I worked within my boundaries. I setup Share a Star, a charity from my bed. I worked towards painting more and having my work exhibited in a gallery. My life was a secluded one but it was something, at least.

Somehow, I was asked to be a part of the film Unrest. It was strange to be recording my life and to be seen by so many different people. My little world of one room was suddenly on show for everybody to see. I managed some incredible things. I mean, I sat up and walked for the first time in years.

I met Samuel in 2015, and my life changed completely. In that year, I had spent my time in and out of resus, fitting for hours. It was terrifying. Being able to get to my brother’s wedding was still such an incredible achievement… I was actually a bridesmaid!

Finally after years of work, I managed to get the book that I had dreamed of writing published. It was so overwhelming to finally have managed it, after years of dreaming. A Girl Behind Dark Glasses is now a finalist in The People’s Book Prize – how mad is that?!

This year I have grown a new level of love, with the birth of our daughter Felicity. She has changed everything in more ways than I can say. She has given me a newfound purpose.

It hasn’t all been sunshine and roses in any sense. I have lost count of the amount of times I have missed a special occasion. People have got married, had children and some have passed away. That is life in the real world.

The decade that has passed is a reminder that I am still unwell, still fighting and still pushing to achieve things within my boundaries. The stark truth is that we shouldn’t have to be ill for so many years, have our hopes and dreams scattered because the M.E Monster or any other illness has taken over.

New Year is difficult because although I know how incredibly lucky I am to have Felicity and Samuel, it also reminds me that it is another year of illness.

I always had so many aspirations in life, and I can say that I have managed so many of my dreams in a completely different way to what I had expected. It’s been tough and it is a completely different route to the one I had planned before I was ill.

I guess what I am trying to say is I understand that New Year is a difficult time of year. I get that what I’ve managed to do is entirely different to another person. It’s been an adventure. I would never compare what I’ve managed to do with someone else. Many of my New Year celebrations in the past few years, was the relief of knowing that I had survived another year.

I wonder what the next decade will have in store for me… if it is anything like this one, it will be a rollercoaster that I will be strapped in for, with Felicity and Samuel by my side.