All the time in the world

I’m ‘lucky’. I’m at home all the time, I spend most of my time free. I realise how lucky this makes me in the eyes of all those rushed off their feet, I really do and I value the time that my predicament allows for me to spend with my loved ones. Goodness though, do I long to be busy. Do I wish to not be still.
Simply put, there is no choice

Finding empathy and understanding

It is often only when a friend is sick with a really bad bug for a few days that they begin to question how I manage being forcibly stuck in bed. Simply put, there is no choice. I think one of the most frustrating things is having time but not having the physical or mental means to do anything with it. It is not just frustrating, or boring, it is simply cruel. You’re trapped in every sense of the word.

If I were to forgo talking about the physical suffering for now and just focus on the mental, cognitive difficulties I might perhaps be able to open you up to a whole other world of unfair injustice. We are so often sentenced to these lives behind four walls, in darkened rooms, physically unable to do anything about it and you would think that it would at the very least give us the option to use our minds to the nth degree. We’ve all the time in the world after all, right? But it just doesn’t work like that.

Cognitive dysfunction

With chronic illness comes a whole host of symptoms and for me (as for many), with my M.E comes cognitive dysfunction, often described by patients as brain fog; because that is the constant state, a foggy-like brain. At the best of times it is that your mind is foggy and a bit forgetful, at the worst you have no idea what’s going on, you can be a danger to yourself, it causes fatigue induced dyslexia, memory loss and speech problems, just to name a few symptoms.

A cruel aspect of M.E

This is without talking about the impact that mental exertion can have on someone with M.E. For me simple conversations can cause me to crash, for my heart rate to sore and my blood pressure plummet and my speech to begin to slur. My words constantly become entangled and my memory recall a laughing stock. A least my loved ones and I can and do laugh, you have to! TV and reading can do the same, it is an overwhelming of the senses that for some reason causes our bodies to begin to shut down. For Post Exertional Malaise (PEM) to become a factor, migraines to set in and nausea to overwhelm me.

My loss of self

I’m lucky, so I’ve been told, it hurts when it comes from those closest to me. For how I long to have an ounce of the ability, the energy others have: the lives they lead. I discussed this here on my instagram support page @myillnessmythoughts and the response was overwhelming. When comments of this nature are made I don’t believe it’s meant out of malice (not always), purely a lack of understanding, of thought of what’s being said. Perhaps it’s only when you’ve lost everything that you truly learn the greatest things; a better appreciation of everything and a deeper compassion for others.

This brings me to my blog. Like so many of the millions of those who have M.E/CFS, I am an extremely driven person trapped in a body that just won’t perform and it’s torturous to live like this and not have outlets for your mind and soul. Healthy people often forget the sense of identity that comes from being able to work, the independence of looking after yourself and your family and when you don’t have those things you need something for yourself.
So I have all the time in the world. Somedays I feel the weight of that pushing down, crushing me, others I feel another wasted decade of my life passing me by.
My blog, this blog, is going to be that. Well that’s what I’ve been saying for two and a half years now. The frustration is overwhelming. If I want to write anything, I know that the rest of the day is out of bounds, the chances of me being able to be social in any form, minuscule. And this is the daily life we, as chronic illness warriors face; choices. Do we see a friend or eat a meal? Do we watch a movie or rest? Do we read a blog post or write a blog post? I know that each one of those decisions determines how the rest of my day will pan out, or indeed the next few days, or weeks. (Understanding Spoonie life is something you can read about here.)
Or I can choose to fill it with love
So I have all the time in the world. Somedays I feel the weight of that pushing down, crushing me, others I feel another wasted decade of my life passing me by.
I can live this time in the frustration that it has taken me this long to build my little haven here or I can choose to fill it with love.
I guess I’ve always been a sucker for love.
Fancy joining me for the journey?


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Image of woman overlooking the sea, standing on the dunes on a sunny day. She is wearing a navy summers dress with a sun hat she is holding on due to a breeze. There is text covering the picture, it reads: "All the time in the world: exploring the constant struggles of life with chronic illness".

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  1. I’m sure your illness must be incredibly hard. I am a caregiver for a lady with Multiple Sclerosis, so I understand that illnesses can be very difficult.

    1. Thank you, I really appreciate you saying that. It’s certainly not easy! I can appreciate being a caregiver must be difficult and I think anyone that is, well they are amazing people.

  2. Hello Amy:
    This is a very moving post. I felt immediate empathy for your struggle.

    It’s, unfortunately, too common for people to dismiss or not fully appreciated experiences that are foreign to them. Perhaps, to some degree this is inevitable. But none the less, we should always strive to recognize each other’s humanity and love each other.

    I look forward to reading your others posts and becoming more familiar with your story. Thank you so much for sharing it here!

    Mind and Love

    1. I agree. And perhaps it is through our own struggles in life that we find a greater sense of compassion for others and a greater willingness to empathise. I hope we can only learn and grow from what we go through and from what others do too and make ourselves better, kinder humans in the long run.
      Thank you for taking the time to read my post and for leaving such a kind comment, Amy

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