Coffee with Esther (May 2023)

Living in a Fantasy World

Hi all,

April was certainly a busy month for the Coffee Break regulars. The clocks went forward and spring started to bloom outside. 

For some of us, it was the time to start thinking about holidays. Planning them, making sure they’re suitable for everybody’s needs. Also, ensuring they would be ready and in a good place to make sure they can go. We had one very brave lady from the UK go off on an adventure to Ireland on her own for the first time. She even popped in on the Coffee Break session whilst travelling on the ferry in the Irish Sea.

It was so uplifting to hear everyone’s plans, seeing the smiles on their faces, and feeling their excitement. We loved hearing everyone telling us what they have planned, either going abroad or travelling within the UK.

Photo by Claudia Altamimi on Unsplash

To me though, at that time, I wasn’t excited about anything. I’ve had a terrible few months with pain and not being able to get it under control. My right leg never stopped hurting. My left leg, hip, and groin area flared up whenever it felt like it. This extra pain, on top of what I had to deal with usually, was really testing my positive mental attitude. But then I had a surprise phone call half-way through the month to tell me the hospital had a date for my caudal steroid epidural injection on the 26th of April. This came just at the right time. I had been on the waiting list for this since July 2022 and didn’t have high expectations as I’d had this procedure back in 2018 and it did nothing for me.

But this time, and with a different consultant, WOW! No right leg pain, as long as I didn’t overdo it. Left leg and groin pain were reduced to a manageable level. I was so happy! The only problem is now I have to pace myself and not rely on the pain to stop me from overdoing things.

So I scrolled through the TV guide and came across a new series called Fantasy Island: a place where you can have a vacation and fulfil your fantasy for a weekend. For example, if you wanted to eat everything in front of you and not put on a pound in weight. This had me daydreaming about what I would ask for; my husband and I had a massive discussion about it.  It was fascinating to hear what we would ask for now, compared to six years ago before Degenerative Cervical Myelopathy (DCM) decided to join our family.

Six years ago we would have asked for luxury items, and riches, to feel youthful/beautiful. Enjoying all the things we could not afford in our real lives. A very materialistic world! Not because we’re greedy, but because that’s what the world makes us think will bring us happiness.

And now, what would we ask for?

Ok yes, we would love for me to be out of pain; that would of course be my first request. But not superhuman fit. Just to a level of pain where I can still enjoy doing things. No fatigue, to be able to stay awake all day. Secondly, we would ask for more time with family and friends whom we love. To be able to indulge in our passions. To feel happy, to have a state of peaceful happiness.

Then we went silent. We couldn’t think of anything else that would be high on the list.

So what’s changed in our lives to alter this so drastically? Myelopathy!

Six years ago we wished for all the things we couldn’t afford to have, and now we wished for all the things we could have! Other than remove my pain totally, but I do use all the techniques to reduce it.  

Although Myelopathy has many, many downfalls, it does have some benefits. It slows down time. What I mean is, before Myelopathy, I wasted so much time on doing nothing or things that were worthless to my life. Now that my time is limited, I concentrate only on things I can and want to do. I’m living in my fantasy world!

This has really opened up my mind more; to realise that living with Myelopathy does make you change your mindset. It can lead you on different paths that you never imagined happening.

  • What would your fantasy island wish be? Both before Myelopathy and afterwards?
  • What are your aspirations now?
  • Could you adapt things in your life so you can achieve them?

Now is the time to start thinking and believing in yourself.

If you want to join our Virtual Coffee Breaks please join our Support Group on Facebook.

Here are the dates for our next Virtual Coffee Breaks:

  • 11th May at 11am BST
  • 18th May at 2pm BST
  • 25th May at 6pm BST
  • 8th June at 11am BST
  • 15th June at 2pm BST
  • 22nd June at 6pm BST

(BST – British Summer Time)

Right, I’m off to book a big family holiday in Devon.

See you soon,