General Musings Health & Wellbeing

Having Hopes and Dreams as a Chronically Ill Person

April 30, 2023
A small plant being held up in someone hands towards the sky.

So much of our lives revolves around having hopes and dreams, things we can hold onto and work towards, especially during the tough times. We like to think ahead, to where we’d like to be and how we might get there. It starts as children, wondering what we might be when we grow up, and continues throughout adulthood as we realise that life isn’t quite as straightforward as we thought and both dreams and more concrete plans fail to come together. And yet we continue to hope and dream. I think it’s human nature.

But what happens to your hopes and dreams when something rocks your world so hard that it feels impossible that you’ll ever get there? What happens when life has beaten you down too many times and you feel like it’s pointless even hoping anything will ever change?

The unpredictability of chronic illness

I’ve thought about this several times over the past few years, since getting so ill with ME/CFS. Because having a life-altering illness such as this, which drastically limits your energy, means all the old rules no longer apply. You can’t switch jobs or move house or work on a project in your free time, because all of that takes energy you simply do not have. Just surviving takes every ounce of effort, and knowing there is no effective treatment, never mind a cure, for your condition leaves you feeling like nothing is ever going to change.

But that isn’t quite true. Things do change, but often in a completely unpredictable manner and rarely because of anything you did or didn’t do. Since first getting ill in 2015 I’ve gone from able to work part-time, to 6 months off sick, to setting up as self-employed from home, to becoming unable to even work from my bed, to dreaming about writing more blog posts, to being unable to even look at a screen, back to writing a bit more, and then again to months of being unable to string enough words together. It’s hard to have dreams, let alone make plans, when every time you think you’ve found your “normal” things change again.

Hopes and dreams are important

But here’s the thing – hopes and dreams are so important. They keep us going through the toughest times, and give us something to cling to when it all feels rather pointless. In fact a major part of my therapy over the past couple of years has been checking in with where I am right now and what would help make me feel a little bit better moving forwards. I’ve learned to make what I’m going to call “little dreams”, the minute plans that would seem so small to anyone else it’s laughable. And yet the sense of achievement upon managing them is huge.

Such “little dreams” have included things like getting out into my garden, going for a walk around the village, going out in my wheelchair on my own, managing to cook a meal for my family, and even making it on holiday. As my health has dipped again this year, quite significantly, I have had to readjust the size of these “little dreams” and that is hard when I’d started to dream a bit bigger again last year. Which brings me to the point of this post – how do you hold onto your hopes and dreams when your health is so limited?

A five year plan

This whole post was inspired by a question I was asked last night. I was dealing with the PEM (post exertional malaise) caused by a birthday trip to the garden centre. Simply sitting in a car and then using my wheelchair for an hour had done me in. But getting to the garden centre had been a huge achievement. I had been dreaming of it for several weeks, worried that even with the very best of intentions and most careful planning I might not be well enough to make it. But I did, and it was amazing. And in the aftermath I decided to keep myself entertained by letting people ask me anonymous questions.

You can view the entire thread here if you’re interested – there were some pretty interesting questions. But one was much harder for me to answer than all the others. And that is because it asked me where I hoped to be in 5 years time.

A screenshot from Twitter showing an answer to the question, "where do you want to be in 5 years?" My answer is "This is a really hard question, as life has taught me that making plans usually fails, especially since getting ME/CFS. So here are a few dreams - publish a novel; build up my garden; find some kind of purpose; have some kind of income; hug more friends in person."

I’m currently so ill that making plans for tomorrow is hard. So trying to think of where I might be in 5 years time feels impossible. After all, it was only last year that we managed to make it on holiday twice (after years of me being too sick to travel) and I had hoped that things were slowly starting to get better. Then Christmas hit and I have become progressively more ill ever since.

The lasting impact of crushed hopes and dreams

If I go back 5 years from now, I had only just accepted that I was too ill to work even from my bed and was starting to realise that a life spent mostly isolated from the world was my future. In the past 5 years we’ve moved house twice, and I’ve gone from housebound to bedridden to housebound to mostly bedridden again. Most of the hopes and dreams I had 5 years ago have not only failed to come into existence, they’ve also fallen from my mind.

And if I go back 5 years from then (so 10 years ago), I can see that even before I got sick my hopes and dreams all came crashing down. Back in 2013 I had already had to give up my dream of having a big family, and had returned to work long before I ever planned to, meaning my dream of spending years at home raising my kids no longer existed. Over the next 5 years I would take on what I thought was a dream job only for it to turn into the worst nightmare ever (I still get upset and angry about how things went down back then), publish my first book only for it to also become a traumatic event I want nothing to do with anymore, and fall ill just when I thought things were starting to go my way.

So, you see, I find myself in a place where it feels like making any kind of plans for the future, especially on a 5 year basis, seems pretty pointless. I just don’t want to be hurt again when life gets in the way.

Finding hope when it feels completely hopeless

But this all felt too heavy as a response to that seemingly innocuous question, especially when someone had taken the time to ask it. So I found myself spending a fair bit of time this morning reflecting on all of this. How do you have hopes and dreams when you are chronically ill?

And this is where the past couple of years of therapy really came in handy! It reminded me that not only was it healthy and natural to have hopes and dreams for your future, it is also okay if things change along the way and you have to edit them. I’ve had so many sessions with my wonderful therapist where I’ve completely smashed a goal I set and we’ve celebrated. But I’ve had just as many sessions where things didn’t work out and we found something else to focus on. And if I needed that much flexibility when setting plans on a monthly basis, then maybe it’s okay if my hopes and dreams for the future were a little more vague.

After all, I have always known I wanted to be in a relationship with someone and have kids. In fact it was the biggest hope and dream of my entire life. But I never could have imagined I’d end up where I am now, married to a trans person who is my carer, and raising the most fabulous autistic child. Yet I wouldn’t change any of that for the world, because it is better than I could ever have dreamed of. So maybe big, open-ended dreams are the way forward for me, when my life is so unpredictable.

Mixing big and little dreams

And that’s how I came to my answer to the question of where I want to be in 5 years. Obviously my biggest hope is that medicine will finally make real progress in understanding post viral illnesses, giving me and so many people like me a real chance at life again. But given the lack of progress over the decades since we first became aware of them, and especially the way in which Long Covid research seems to be focusing so much on the things ME/CFS research has already proven wrong, I don’t really hold out huge amounts of hope for this.

So what can I hope for that isn’t reliant on something so far out of my control it’s impossible to influence? Well, I decided to focus on what was most important to me. And right now that is stories and nature. I currently have three, yes three, novels bumping around in my head wanting to be told. And it is entirely frustrating that I am too ill to get those words onto paper. So my hope is that within the next 5 years I’ll manage to get at least one of them published.

And my garden is so important to me, both physically and mentally. But there is so much work to be done to get it to the stage I am dreaming of. I think 5 years should provide enough time to make a fair bit of progress on it! And the great thing about this hope is that although I have a very clear idea of how I want my garden to look and feel, I can still get little boosts of confidence with each little addition along the way. I need to remember that the end goal is great, but it really is a 5-year-plan kind of project!

Finding a purpose within your dreams

More than anything, I would love to find a purpose in my life. I feel as if this is something I have been struggling with for most of my life, if I’m being completely honest. I’ve always known I wanted to make a difference, not necessarily on a grand scale but rather on the small, personal scale. By that I mean that for most of my childhood and teen years I wanted to teach kids. To have an impact on their early lives, giving them confidence in themselves. Nurturing them. I also wanted to be a wife and mum, as I said before. But trying to figure out how that works when I’m so ill everyone else is looking after me is hard.

Because I’m a carer by nature. And I want to make the world a better, kinder place for people. I’m far too sick to do a lot of things, and the little things I do manage such as writing awareness posts, promoting people’s work, and cheering people on feels very vague and nebulous. Kind of like my blog and socials which have zero overarching theme! I’d really love to find my place in this world, something that gives me a sense of purpose and which I can grow with.

I have all kinds of wild ideas with alarming frequency, things like wanting to set up a second-hand queer bookshop for those who want to read more queer books but can’t afford them new. Or a trans co-operative or charity where people can donate clothes and accessories etc and trans people can build up their wardrobes much quicker, without breaking the bank. Or a gardening community, matching up those without gardens or time to spare with others who are too old or ill to keep on top of their garden. Or… or… or…

My mind is full of these things, but I do not have the energy nor the means to do any of them. But finding a purpose that means something to me, makes a difference to others, and is accessible is quite the task. I hope I start to figure it out over the next few years. And if it brought me a little bit of income, meaning I wasn’t so reliant on benefits, that wouldn’t hurt either!

Community makes everything so much easier

If there’s one thing I’ve learned over the past few years though, it is that there isn’t much in this world that is more precious than community. When life beats you down, and it feels pointless carrying on, it’s those people around you who will hold you up, make you laugh, and cheer you on. They’re the ones who make having dreams possible, because they inspire you with their own lives and help you figure out your own.

Which is why my final hope for the next 5 years is that I will have the opportunity to meet many more of the people I call my friends. So many of you are people I’ve only ever spoken to via tweets or comments on Instagram and Facebook. And that is wonderful, you are all there when I need you most, because I’m stuck in bed unable to do a thing. But one day I really hope to meet as many of you as possible, and give you a proper hug (if hugs are your thing, of course!)

So there you have it. My very long and winding thoughts about having hopes and dreams when you’re chronically ill. It isn’t easy, and it often hurts a lot. But it’s so important to have something to hold on to. And I hope that all of you have the opportunity to build up dreams and one day see them come to life.

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