My Bucket List Changed When I Became Chronically Ill

I never sat down and wrote an official bucket list. I was not someone who pinned grand ambitions to a corkboard or talked about ticking things off before a certain age. But like most people, I carried a quiet list in my head. A collection of assumptions really. Things I thought I would do later. Things that felt inevitable rather than urgent.

When the kids were older.
When life slowed down a bit.
When I had more time and more energy.

I imagined myself still active. Still capable. Still able to say yes without calculating the cost.

Before ME CFS and Fibromyalgia, my future self could climb mountains.

I wanted to climb the Brecon Beacons. Not race up them or conquer anything dramatic. Just walk. Feel the air change. Take photos without worrying about how far I still had to go back. I liked the idea of skiing too. Nothing extreme. Just the experience of it. Long treks around the UK. Coastal paths. Forest trails. I wanted to travel to countries to go sightseeing. Paddleboarding. The list goes on.

We own paddle boards for the kids. We have kayaks. My husband takes me out on our two-seater kayak, and I love it. I really do. Being on the water in the Norfolk Broads feels like a small piece of freedom I can still access. But even that has limits now. My back starts to burn. The pain builds quietly, and then suddenly it is unbearable. I have learned the hard way that enjoying something for ten minutes too long can steal the next three days.

These were not wild dreams. They were gentle ones. Normal ones.

And that is what makes losing them hurt in a way that is hard to explain.

The Quiet Grief of an Unwritten Bucket List

One of the strangest parts of becoming chronically ill is grieving things you never actually did. There is no memory to hold onto. No photo to prove it mattered. Just a sense of loss for a version of your life that felt guaranteed.

Chronic illness has a way of shrinking the future. Not in a dramatic all at once way. More like a slow narrowing. You stop planning far ahead because you do not trust your body to show up. You stop saying things like one day because one day becomes a risk.

At first, I told myself it was temporary. That I would rest properly. That I would build back up. That my old assumptions would slot back into place.

If you live with ME CFS and fibromyalgia, you probably recognise that phase. The bargaining. The waiting.

Eventually, you realise that waiting for your old life to return is costing you the chance to live the one you actually have.

That is when my bucket list changed.

Letting Go Without Giving Up

There is a difference between acceptance and giving up. It took me a long time to understand that.

Letting go of certain dreams did not mean I stopped wanting joy or challenge or meaning. It meant I stopped measuring my life against a body I no longer had.

I cannot climb the Brecon Beacons. I cannot go skiing. Long treks are not realistic for me. Paddleboarding independently is not something my back will tolerate. These are facts, not failures.

For a long time, I treated them like personal shortcomings. As if trying harder or being more positive would somehow change the neurological reality of ME CFS.

It will not.

And that realisation was oddly freeing.

Redefining Adventure When You Live With ME CFS

Adventure used to mean movement for me. Distance. Physical effort. Achievement.

Now adventure looks different.

It might be sitting somewhere new and noticing how my body reacts without judgement. It might be trying something gently and stopping early on purpose. It might be saying no to something exciting because I know the cost would be too high.

That kind of restraint is not weakness. It is skill.

There is bravery in choosing rest when everything in you wants to feel normal again.

This is something I wish more people understood about chronic illness. Especially ME CFS. The discipline it takes to not push. The constant calculations. The mental energy it requires to protect a body that does not always warn you until it is too late.

The Emotional Weight of Changed Plans

There is an emotional cost to changing your bucket list that people do not talk about enough.

Every time someone mentions a hike or a spontaneous weekend away or a physical challenge, there is a flicker of something inside me. Not jealousy exactly. More like recognition followed by loss.

I know that version of wanting. I remember it in my bones.

Living with ME CFS and fibromyalgia means carrying that grief quietly while reassuring others that you are fine. That you are coping. That you have adjusted.

Sometimes you have. Sometimes you have not. Often it is both at once.

What I Want Instead Now

My new bucket list is not about doing more. It is about suffering less.

• I want to feel safe in my body more often than not.

• I want to find one place that feels restorative rather than draining and return to it again and again.

• I want to build a life that does not constantly punish me for participating in it.

• I want to find hobbies that meet me where I am.

• I want to take photos of small things.

• I want to travel differently. Short distances. Accessible places.

• I want to document my life honestly without minimising it for other people’s comfort.

• I want to write about ME CFS and fibromyalgia in a way that feels true rather than inspirational.

• I want someone newly ill to feel less alone because they found my words.

• I want my bucket list to feel like safety, not pressure.

That means choosing gentler hobbies. Protecting my energy. Saying no, even when it disappoints people. Saying yes only when I have space to recover.

Living Fully Does Not Always Look Loud

There was an obsession with big experiences. Big trips. Big achievements. Big stories.

Living with ME CFS and fibromyalgia has forced me to see value in smallness.

A good day where my pain is manageable.
A conversation that does not exhaust me.
A moment of stillness where I am not monitoring my symptoms every second.

These things matter.

My bucket list did not become smaller because I am weaker. It became more intentional because I had to listen.

If Your Bucket List Has Changed Too

If you are reading this and recognising yourself, I want you to know something.

It is not your fault that your dreams had to adapt.
It is not a personal failure that your body has limits.
You are not less ambitious because your goals are gentler now.

Chronic illness changes the shape of a life. That does not mean it removes its worth.

Your bucket list can be about comfort. About connection. About survival. About moments that do not hurt.

Those goals are valid.

They are real.

And they are enough.

About me

I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business, and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, TMJD, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.

You’re not alone here. You’re welcome to stay as long as you need.