How Recurring Pain Changed My Everyday Life

I always thought the back pain I had was temporary. I thought that one day it would go away and I’d get back to my normal self.

Instead, it slowly became something I had to learn to live with, and I eventually realised that it wasn’t only my back that was affected.

If you’re new to my blog, I was diagnosed with axial spondyloarthritis in 2024. I first noticed the pain around my sacroiliac joints, but over time I started having pain in my neck and shoulders, and eventually my knees were affected too.

I’ve previously written about this in I Kept Treating My Back Pain But It Kept Coming Back. That post is more about how my pain developed and why I kept thinking I had injured my back again.

This post is a little different. I want to talk about what living with recurring pain has actually changed in my everyday life, because I don’t think I realised at the beginning how many ordinary things I would eventually start thinking about.

Can I sit here comfortably? How much walking will there be? Will I be okay afterwards? Should I take the stairs or the lift?

These are questions I never used to ask myself, but now they are part of my everyday life.

Everyday Things Became Harder With Recurring Pain

There are so many small things that have become more difficult, and most of them are things I would never have thought twice about before.

Getting ready in the morning can take longer than it used to. Some days I just need to slow down and give my body a bit of time before I feel ready to start the day, rather than rushing around as I used to.

Sleep is probably the biggest change for me.

My bed is now covered in pillows, and somehow every single one seems to have a purpose. One supports my back, another might go between my knees, and if my neck is painful, I might need another one. I sometimes look at my bed and wonder how I ended up needing so many pillows just to get comfortable.

I also wake up during the night to change positions. It happens so often that pain has almost become my natural alarm clock.

Even my mattress and pillow are things I think about now. Is the mattress too firm? Is my pillow thick enough? Am I lying in a position that my body will tolerate tonight?

I never thought I’d have so many thoughts about going to bed.

Sometimes I get it right and manage to find a comfortable position. Other nights, I end up moving the pillows around, changing position and trying again. I’ve learned that there isn’t always one perfect answer.

Sometimes, I just have to keep trying different things until I find something that works for me.

Pain Changed the Way I Worked

I never imagined that my health would eventually affect the way I worked.

I’d always been proud of working full-time. I liked earning my own money, being independent and having a career I was proud of, so reducing my working hours wasn’t an easy decision for me.

I now work remotely and have flexible working hours, and I also reduced my working hours so that I have more time to look after myself and prioritise my health. I can take regular breaks, get up and stretch when I need to, and if my morning stiffness is particularly bad, I can start work a little later.

That flexibility has made a huge difference. I don’t have to spend the whole day trying to ignore how my body feels just because I have work to do, and I don’t have to squeeze every medical appointment, exercise session or rest period into whatever time is left after work.

I wrote more about this in Working with Axial Spondyloarthritis: Choosing My Health.

For a long time, I thought changing the way I worked meant I was giving something up. Looking back now, I think I was actually trying to find a way of working that allowed me to look after myself too.

I’m really grateful that I found that.

I Started Planning My Life Around My Pain

Travel has probably changed the most.

Most of my trips used to involve hiking, long walks and outdoor activities. I remember walking for eight hours in Santorini just to watch the sunset in Oia with my husband, and I remember being completely exhausted afterwards but thinking it was worth it.

I can’t imagine planning a day like that in quite the same way now.

I don’t go on crazy hikes anymore. These days, my trips are a little (probably very much) slower, with more good food, more time sitting down and more time simply enjoying where I am. 

I still love travelling. I don’t think that part of me has changed; I’ve just had to find a way of travelling that works better for my body.

I also give myself more time to get to places. If Google Maps tells me somewhere is a ten-minute walk, I probably won’t leave with only ten minutes to spare. I’ll give myself fifteen minutes or more because I’d much rather arrive early than spend the whole journey worrying about rushing.

I also like having options. If I’ve planned a few things for the day, I don’t always decide beforehand that I’m definitely going to do all of them. I’ll see how I feel, and if my body isn’t having a good day, I’ll change my plans.

I’ve realised that changing my plans doesn’t mean I’ve ruined the day. Sometimes I just have to find another way to enjoy it.

How Recurring Pain Changed the Way I Exercise

Exercise has been a bit of trial and error for me.

I used to enjoy cardio because I liked how I felt after a good session. At one point, I started doing more strength training because I wanted to build strength, but I noticed that some exercises seemed to aggravate my hip symptoms.

That really frustrated me because I thought I was doing something good for my body. It took me a while to accept that something I thought would make me stronger wasn’t necessarily working for me.

These days, I tend to do more yoga and gentle stretching. I also enjoy walking, especially on flatter ground because my knees don’t always appreciate hills or uneven paths.

I still want to stay active and I still enjoy the feeling of moving my body. I just don’t feel like I have to push myself as hard as I used to.

If you’re interested in learning more about exercise and axial SpA, NASS also has information about physiotherapy and exercise. My experience is personal and what works for me may not work for someone else.

I’ve also learned to pay more attention to how I feel during and after exercise. Some days I can do more, while other days I need to take things a little easier. I’m slowly learning not to feel guilty about that.

The Mental Space Recurring Pain Took Up

I don’t think I realised how much time I’d spend thinking about pain.

Sometimes it’s as simple as deciding whether to sit down. If I see a chair, I might wonder whether it’s too low, whether I’ll be able to get back up easily or whether I’d actually be more comfortable standing.

These are things I never used to think about, but now they can go through my mind without me even realising it.

Sometimes I’ll take the lift instead of the stairs when I’m out, and then I’ll wonder whether people are looking at me. Will they think I’m lazy? Will they think I’m exaggerating? Will they wonder why someone young is taking the lift?

I’m young, and I don’t always look like I’m in pain. People can’t see what my body is dealing with and I think that’s something I’ve become much more aware of.

I also think about how I’ll feel later. If I have plans in the evening, I might think twice about doing too much earlier in the day because I don’t know how my body will react.

There have been plenty of times when I’ve decided not to do something because I was worried about making my pain worse. I don’t want pain to stop me from doing everything but I also don’t want to keep pushing myself until my body forces me to stop.

I’m still learning when to push myself and when to listen. I’m not always good at it, but I’m getting better at noticing when my body is trying to tell me something.

If you’d like to read about what one of my particularly difficult flare days feels like, I’ve written about it in What a Bad Axial Spondyloarthritis Flare Day Feels Like.

I Became More Aware of Pain-Free Moments

I notice the good days much more now.

I’m grateful when I can sit comfortably, when I sleep well, when I wake up and don’t immediately think about what hurts, and when I can get dressed without having to think about every movement.

I’m especially grateful when I can walk around without constantly thinking about my knees.

Before all of this, I wouldn’t have thought twice about any of those things because they were just normal parts of my day.

Now they feel different.

Sometimes I’ll have a day when my body feels a little better than usual, and I’ll notice it. I can sit comfortably, move around without thinking about every joint and get through the day without constantly wondering what hurts.

Those days feel really special to me now.

Recurring Pain Changed More Than I Realised

Looking back, I don’t think I realised how much recurring pain would change my life.

I miss being able to go on a long hike without thinking about what my body might feel like afterwards. I miss making plans without wondering whether I’d have enough energy, and I miss being able to just do something without thinking about it first.

But I’m also learning that I don’t have to stop living because things have changed.

Sometimes I need another pillow. 

Sometimes I take the lift. 

Sometimes I give myself an extra five minutes to get somewhere. 

Sometimes I choose a quieter holiday.

Sometimes I need to change the way I work. 

Sometimes I just need to admit that I’m tired and slow down.

There may be one problem, but there are millions of possible solutions.

I don’t think I’ll ever find one perfect way of living with pain. I’m just learning, little by little, what works for me.

I still have difficult days and I still miss the freedom of doing things without thinking about pain. But I can still travel, I can still work, I can still exercise and I can still make plans.

They just don’t always look the way they used to.

And maybe that’s okay.

I’m still figuring it out.

And I’m choosing to live my gift.

Lots of love,

Ling