Live: My word for the Year (2025)

Ten years ago, I had the worst Christmas. I was signed off work sick due to work-induced stress (I genuinely thought I was losing my mind) and I did not know how to function. I did my best to make it fun for my then 3 year old son, but I was living in constant fear.

Then, one evening, I decided to pray. I’m not big on prayer, but I was desperate. And in that moment of stillness, I felt a blanket of calm fall over me, and the word “Surrender” entered my mind.

I had no idea at that point that within a matter of days I’d find out I was being made redundant. That the year ahead would bring new jobs, a new home (and relocation), my wife becoming suicidal, and getting a virus I never truly recovered from. Had I known what was in store for 2015 I don’t know what I’d have done. But focusing on “Surrender” during that year really helped.

And thus began my annual tradition of choosing a word for each year. I must admit that few have been as poignant and successful as that first year. As my health has declined and life has got increasingly tougher, it’s felt as if whole years have gone by simply fighting to survive. There wasn’t time (or energy) for much else.

Which brings me to my choice for 2025, and how it mirrors that choice ten years ago pretty well. Because as I tried to think of a possible focus for this next year, I felt overwhelmed by despair.

There are so many things I long to do, but the reality is I am just not well enough and I’d just be setting myself up to fail. Perhaps I needed to surrender goals and see what was left. And as I sat with that thought, I felt another word drop into my heart – live.

Is living really something to strive for? Isn’t it what we try and do every single day? I briefly considered changing it to something like “thrive”, but it did not feel right. That word, “live”, kept coming back to haunt me, over and over again.

So what does it mean to live? Well, that will be different for everyone. But for me it means learning to live within my ever-changing limits. Which is so hard. Having put so much work into recovering to a better baseline after my 2020 relapse, getting increasingly ill again during 2024 was a kick in the teeth.

Now, before I go anything further, I want to clear something up. When I say I put work into my recovery, I mean things like healing my anxiety, which pushes my already delicate nervous system over the edge. And super gentle exercises to help with my hEDS joint instability and pain. I am NOT talking about recovery from ME/CFS or anything like that. Please don’t think I am.

Anyway, having done the work that reduced extra stress on my body, it was absolutely gutting to be hit with an onslaught of new and increased symptoms. We now believe I have hit perimenopause and that this has made everything so much worse. Which makes sense – even people without chronic illness say perimenopause and menopause affects so much. So those of us with already poorly bodies? We haven’t got a chance!

It took me most of the year to realise that the reason my mental health had tanked so badly after such a vast improvement previously was due to hormonal shifts. And the reason I was having so many more meltdowns was my hormones. And hormones could be blamed for all the many physical symptoms I was experiencing too.

It also took me most of 2024 to find a doctor who was willing to work with me on this, rather than brushing me off time and time again. I feel like 2024 was spent fighting both my deteriorating body and the medical profession. Every time I asked for help I just seemed to be let down further. But I knew I needed help – this wasn’t something I could fight alone. And it wasn’t something I was willing to accept, when there might be something that could help.

But the overall result has been an increasingly exhausted body, which has struggled more and more as time went on. I spent the last quarter of this year fighting repeated infections, with multiple trips to Urgent Care, 4 courses or antibiotics, and now antifungal treatment too. I am done in.

Which is where I find myself today. Stuck in bed, having had one of my worst Christmasses ever. I have slept most of the festive period. I have been so sick I have barely eaten. And I just feel miserable.

So what can I do, except live? Living feels like an act of rebellion at this point, given everything that’s trying to pull me down. I don’t want to continue feeling so bogged down by each new fight that I miss the opportunity to live my life. And I don’t want to spend the rest of my life waiting for “one day” when they might finally develop a treatment or cure for ME/CFS and give so many of us our lives back.

No, I want to learn how to live, right now. In this very poorly body. In the best way I possibly can. Because I’ve spent almost 10 years fighting and I want to be able to get up and look forward to whatever little glimmers of life I can find each day.

Does this mean I won’t continue fighting for better? No, of course not. Does it mean I won’t keep hoping for medical advances? Um, who would do that? It just means I want to try and eke out a little bit of *something* wherever I can this year.

I’m genuinely not sure what this will look like. And so, again, there is a mirroring back to the need to surrender my need to know what might be ahead. I hate uncertainty. But maybe this year I can learn to live a bit more in the moment and see where life takes me.

Fancy joining me?