Lessons from Pain: We all need to slow down

The pain started in the early hours of New Year’s Eve in 2023.

It came out of nowhere while I was trying to sleep and it was unapologetic, demanding my attention. It started in my left hand, like a tingling sensation you get when you accidentally sleep on your arm.

It quickly progressed to a sensation I can only describe as my hand being on fire. It moved up my left arm and into the centre of my chest. My partner was sound asleep next to me and I quickly woke him up in a panic.

Left arm, centre of chest … you put two and two together and you immediately think “heart attack”.

I sat there for a moment in bed, staring completely bewildered at my arm wondering what the heck was going on. Prior to this, I had spent a lovely Christmas in my childhood hometown of Southport with my family, and I was due to spend New Year celebrating my partner’s brother’s birthday and welcoming in 2024 with some bubbly.

The pain got even worse so I got on the phone to 111 who were brilliant and, rightfully so, were concerned I was having a heart attack and told me to go straight to A&E. Suddenly, my partner and I were dressed, bag packed and in a taxi to the nearest trauma hospital.

The whole time I was telling myself not to panic. I’m 26, I’m healthy, it’s probably nothing. While another, more panicked part of me that resembled the anxious orange character in Inside Out 2, was frantically running through a checklist of everything that might be happening.

My dad has a heart condition, could I have it too?

Have I got some weird infection?

Is this COVID?

Am I about to lose my left arm? Will I be able to play the piano or guitar again?

Am I going to die?... (your mind goes to some dark places when you're in pain)

We arrived at A&E and were quickly seen by a trauma team who did all the appropriate tests, and I very quickly had to get over my phobia of needles. And then we waited.

And waited.

And waited.

16 hours later I finally saw a doctor who told me my heart looked perfectly healthy and I should go home and rest and enjoy the New Year. I was stumped. The pain was still there and by now had travelled to my left foot and leg.?

So, we went back home, wacked on Jool’s Holland and then tried to go to sleep. The pain got worse and worse and worse and spread into my right leg. It felt like someone was sitting on my chest and electrocuting my hands and feet, to put it plainly.

I called my local GP and eventually spoke to a doctor who told me to go back to A&E. I even spent ￡50 to speak to a private doctor for 15 minutes, who also told me to go back to A&E. So back we went. Another 13 hour wait, only to be told they can’t find anything wrong with me and to go back home.

What followed was a month of, and I don’t put this lightly, agony. I couldn’t understand how I could be in that level of pain and yet doctor’s couldn’t find anything wrong with me, or didn’t seem too concerned to investigate why this was happening.?

The only thing that would make the pain bearable was to put a hot water bottle on my hands and feet at all times. Which isn’t very practical.

To make matters even worse, I was due to start a new job in early February. At the beginning of February I saw a doctor who was also stumped and put me on an emergency referral to see a Neurologist. However, the wait time was a minimum of 12 months… for an emergency referral. He prescribed me a low dose antidepressant and very strong painkillers, which didn’t work, and sent me on my way.

Then started the frantic googling of what this could be, which is never a good idea when you’re in a vulnerable state and in pain.

Neuropathy.

Brain tumour.

MS.

The frantic researching was not helping.

And then it was time to start my new job. Originally, I was excited about it, I’d wanted to work at this company for years. Instead, I was very nervous and wondering how the heck I was going to be able to do it considering I couldn’t take my hands or feet off heat.

Now, I fancy myself quite the creative and I had fashioned myself a portable heat device since I couldn’t take my hands and feet off heat. I bought myself two portable chargers and heat pads that plugged into the chargers and taped the heat pads onto my feet and arms with masking tape under my clothing. I put the chargers into the pockets of my trousers.

Nifty ey?

Starting a new job is nerve wracking enough. You want to make a good impression, you want to come with energy and enthusiasm, not being taped to a heat pad which looked very, very questionable in any situation.?

For the first few days this worked quite well. I was commuting from Newport in South Wales to Bristol, but once I made it to my desk I could plug the heat pads into a socket. Ingenious! I thought. But how long could I keep this up?

Now, I thank my lucky stars, my new colleagues were lovely and one of the benefits of this job was remote working, which enabled me to work from home with my hot water bottle handy. I also had access to private healthcare, which I recognise is a huge privilege given the strain the NHS is under and how many people are waiting to be seen for serious health issues.

As soon as I was registered with my private healthcare, I booked myself in to see a private neurologist, who was brilliant. She listened, she was patient, she was inquisitive, she was validating, she was careful, she even hugged me when I couldn’t get my words out. By this point, I’d been in constant pain for 5 months.

I’d learnt that pain quickly changes a person.

Almost everyone has experienced some form of pain in their life. But most pain promises that there will be an end to it, that what you’re experiencing won’t be forever and you can get your head around it because you can either see the broken bone, or know your period only lasts 4 days, or know the pain killer will kick in soon.

Chronic pain is a whole other ball game. It makes you irritable, short-tempered, angry at the world, angry at other people, frustrated, reclusive, and causes the parts of your personality that make you 'you' to hide away in the shadows.?

And this was the worst thing about it. I hated who I felt myself becoming. Especially when I was getting no answers for why my body was doing this to me. I hated that it was becoming the sole topic of conversation between my partner and me.

Scan after scan, blood test after blood test, physical exam after physical exam, hormone tests, blood sugar tests, MRI scans … everything was coming back not just normal, but super duper healthy!!!

In fact, I’ll have you know, for someone who is so pale who lives in a country where rain and grey clouds is all we know for 300 days of the year, I have exceptional Vitamin D levels!

So then my neurologist did something I wasn’t expecting. She asked me about how I was emotionally. She asked me about the kind of year I’d had. Had I been under any stress? She even asked me about my childhood.

As it turns out, 2023 wasn’t a great year for me. I was in a stressful job that was unstable, frankly toxic, and wore me down. But I explained to her that I wasn’t in a job like a trauma-surgeon or a first responder or even a solider, I was in a Communications job. I worked from home in my fluffy socks with a heated blanket most of the time. Surely this has nothing to do with my pain?

She tilted her head slightly with this knowing look on her face and proceeded to tell me the science behind stress, and how it can manifest in the body. One way she explained it really stuck with me.

She said, “Stress is like smoking. In the medical profession we can say with absolute certainty that smoking causes cancer. Does that mean that everyone that smokes gets cancer? No. Does it mean that smoking a cigarette here and there means you’ll get cancer? Not necessarily. But if someone is constantly smoking multiple cigarettes a day for a prolonged period of time, does their chances of developing cancer increase? Absolutely. Does this also mean that people who have never smoked a day in their life develop cancer? Absolutely. Does this even mean that there are people who smoke multiple cigarettes a day for their entire lives and never develop cancer? Yes, it happens.

The same can be said for stress. For some people, they can handle stress, in fact stress, or rather ‘pressure’ can be good for us to some degree, it can challenge us and push us forward. But if you imagine a bridge, its job is to hold something up. If we put pressure on that bridge, what’s it going to do? It’s going to make it stronger. If we put stress on that bridge however, particularly when we haven’t given it the right equipment to handle that stress, and that bridge keeps enduring constant stress, it’s far more likely that it’s going to falter under the stress.

Your brain is like that bridge. It’s been in a state of stress for so long, and you haven’t even realised it. What’s likely happened is that as a protective response, it’s mixed up its signalling and is telling your body to feel pain. Your brain is being overprotective.”

The tears were streaming down my face as she spoke. I never knew that stress could wreak such havoc on the body. Especially from such a seemingly normal job. Or that what I thought was pressure from my work helping me to get better, was actually stress that was taking a toll on my body.

As well as a creative person, I’m a deeply curious person and love to research, which is why I did a Sociology degree. I threw myself into research on stress, pain, and what I could try to do to help the situation. I was fascinated with what I learnt.

Modern medicine typically has us looking at one part of our body at a time. If we have depression, we focus on treating the brain. If we have IBS, we focus on treating the gut. If we have heart issues, we focus on treating the heart. But our bodies are this wonderfully interconnected ecosystem that is impacted by our social, psychological and physical environment. So while I was experiencing pain in my hands and feet and easing this with heat pads, I started to find myself learning about the body, our minds and our society which seemingly had nothing to do with my pain, and everything to do with my pain all at once.?

I also realised that what I was learning doesn’t just apply to people who are stressed, experiencing chronic pain or health issues, it applies to all of us. It was preventative healthcare at its absolute.

I finally saw the NHS neurologist back in December, ten months after my GP had put in the request for an emergency referral. I went to that appointment with pages of notes, pain diaries, dates, and research I had done. The doctor was quite impressed. But he also said something to me that stuck with me:

“Sarah, I’ll be honest with you. I always refer to the times we are in as ‘The dark ages’ when it comes to healthcare, particularly when it comes to our brain and mind. There is still so much we don’t know about the brain. I’ve seen 6 people today, you included, and I know for certain what is happening with 1 of them. There is only so much that modern medicine can do these days. I can prescribe you with pain killers and do more blood tests, but ultimately, and you’re clearly already doing this, you need to become self-aware of what works for you. Look into mindfulness, meditation, holistic health, reflexology whatever it is you think would help you.”

I told him about all the things that I had researched and started to implement in my life that had significantly reduced my pain (more on this later), and he said:

“That all sounds brilliant and really promising and I wish all of us did this, especially before we get sick. We don’t have preventative healthcare in this country, we’re too stretched.”

A light bulb moment went off for me when he said that.

We don’t have preventative healthcare.

Ultimately, I’ve reached a point in this health journey of mine where I’ve actually become grateful for what this pain has taught me, and is still teaching me, and it’s made me want to share what I’ve learnt with others to hopefully help them prioritise their health and wellbeing and learn to slow down in a society that seemingly rewards burn out, overworking and deprioritising our health.

My pain has forced me to slow down, to listen to and to understand my body, to question the way we all live which is seemingly ‘normal’, to fall back in love with nature, to take care of myself, and to become much, much kinder to myself. And so now I can honestly say thank you to the pain, because I would still be deprioritising my health a year later without it.?

I’ve started this series called, “Sarah says, ‘Slow down!”, where I will share more of what I’ve learned from my own experiences, how I’ve been able to significantly reduce my pain, what I’ve discovered from speaking with health experts about how stress materialises in so many ways.

I hope that this can act as a guide to help other people who may be experiencing chronic pain, and a resource to prevent others from deprioritising their health to a point where it causes irreversible damage.

I can’t promise what I'll be sharing in this newsletter series will completely get rid of existing pain, or that you won’t experience ill health in the future. I am still navigating my own health journey. But there are some small and big changes we can all take to slowing down, living more mindfully, empowering ourselves with knowledge and self awareness and putting preventative measures in place to ensure we can live lives that actually work for us.

All of us.

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