Reading · In my bones... · RSS Amplifier

Hello all,

How was your Christmas? I hope you managed to find some moments of festive joy. If you have a chronic illness, it can be a tough time of the year, as the illness doesn’t magically turn itself off, no matter how much we wish it would. But I hope that your pain and your flare ups were kept to a minimum. I myself felt quite fatigued and I had a few IBS flares (I’m sure it had nothing to do with all the chocolate I was consuming….), but overall we had a lovely time with our family and friends.

My husband and I also managed to find some time to rearrange our respective creative areas in our home. We fancied a change. We wanted to bring in the new year with our home feeling like a cosy sanctuary. We ended up moving my writing desk by the window, so now I have plenty of opportunities to daydream out at the old oak trees and to indulge in stolen moments watching the crows cruise around in the wind.

My husband moved his musical instruments to another room where he can make as much noise as he wants. We often chuckle to ourselves. He has ADHD and bags of energy. His way to recharge is to play drums, play loud music, play video games and move around like the cartoon character Taz; a whirlwind of energy and hyperfocus. Whereas I’m at the opposite end of the spectrum. I need calm solace and stillness. My energy levels are always flashing red, about to run out. I need to move at a snail’s pace. The way I recharge is to read books and have long leisurely stretches of time where I deeply contemplate the meaning of life. But we make it work. We understand each other and we work to our strengths. Opposites do seem to attract after all.

We’ve learnt over the years what we both need to function and what keeps us at our best.

I’ve had to relearn what this means going forwards with chronic fatigue and inflammatory arthritis, we both have. This past year has been a lot of trial and error, figuring out how much I can do, how much I need to pace myself, how much I need to rest.

We’ve had to strip back to the very basics and relearn everything again from scratch and what it means to function at our best. The main questions have been ‘How do we reduce as much stress from our lives as possible?’ and ‘How can I reduce the inflammation in my body in a sustainable way?’.

We’ve had to look again at our diets, our sleep patterns, our movement and exercise needs. Our environment. Our work/life balance and our social commitments. And most importantly, our mental health.

This year I finally admitted to myself that I needed help with this aspect. My depression and anxiety were consuming me. My nervous system was on high alert at all times and I knew this was causing a lot of unnecessary stress to my body. So I gave myself one of the greatest gifts that I’ve ever given myself; therapy. I can honestly say that its changed my life. I hadn’t realised how much emotional baggage I was holding onto. I didn’t realise how often I was talking negatively to myself and how I was warping my own perception of the world. But ultimately, I didn’t understand that I was actually living with deep grief and I needed to give myself some grace. I was grieving my old life, my old body, but also my future. The future I thought I was going to have.

I look back now and think ‘Of course I was grieving’, it seems so obvious to me now, but when you live with depression, it destroys your self-esteem and your self-worth, as well as your ability to feel joy. It corrupts your sense of reality.

My therapist guided me and showed me that since becoming ill I had lost my job, my purpose, my energy and even certain friends. I was living in constant pain and uncertainty. All this with very little support from the people who I thought were going to be there when things went bad, like Doctors who would listen, instead of distorting your sense of truth. Of course I would be struggling, anyone would be in the same situation. I needed to show myself some kindness.

It took months, but my nervous system has finally started to calm down. My self-esteem has started to increase. I now honestly believe that I deserve better from life and I want to start living it to its full potential. It will look very different from most peoples, now that I have this illness, but it will be my life.

During all of this, there has been my husband. My rock and safety blanket. He has shown me time and time again that I can rely on him even during the darkest of times.

The biggest way he showed this to me this year, was when we got married back in March. He wanted to show me that he was committed, literally through sickness and in health. We had a beautiful and intimate ceremony up in the Yorkshire Dales. Our personal vows to each other perfectly summed up our love and commitment to each other. We truly are life partners.

I honestly think that being there and showing up for someone, even when they are at their absolute lowest and can give you nothing in return, is one of the most loving things that anyone could do. I now completely understand what they mean by ‘Love is selfless’. This year I haven’t always been able to give back what he gives me. I’m not sure I could ever put into words how much I appreciate him, but I will keep showing up for him in all the ways that I can. One way to do that, is to work on myself; my mental and physical health. He always says ‘You are enough as you are’, but I want to be the very best version of myself, for him and for me.

Even through all the hard times, we’ve managed to have many glimmers of joy. We’ve been on many adventures together in our trusty VW campervan, we saw our favourite band in concert, we honeymooned in the dreamy Lake District, and we even welcomed baby nephews to the family.

Over this past year, there have been many tender moments of happiness. We learned how to slow down, soften and compromise. We practiced clear and loving communication with ourselves and those around us, but it hasn’t always been easy or smooth sailing.

There has also been loss of family members, health scares to those close to us, many nights waiting and fretting over long awaited appointments and test results. There was also job redundancies and a few months of not knowing when the next pay check was going to come through. There were many highs and many lows to contend with in 2024.

We’ve also had to relearn our roles, not only with each other, but also in how we show up for those around us. This has meant putting boundaries in place and prioritising ourselves as a couple at times, which felt like foreign territory. We are both chronic people pleasers.

Putting boundaries in place caused immense guilt and friction at first, but like anything, the more you do it, the easier it gets. It has been good practice, because I have recently been given the all clear to start my new immunosuppressant medications for my ankylosing spondylitis. This will hopefully mean less inflammation and less pain, but it will also mean putting even stronger boundaries in place to protect my health and immune system. I’m sure there will be many more lessons to be learned in the year going forwards.

However, before we zoom forwards into 2025 writing out a whole list of things we want to achieve, I think it’s important to reflect back on the previous year. It was all too easy for me to reflect on the negatives and to say 2024 was shit because it was the year I got diagnosed with a life altering illness. However, the more time I sit here and reflect, the more I realise there were so many magical moments. In fact, 2024 may have actually been one of the best years of my life.

I have learnt so much about myself. I now realise I am bloody strong and resilient. Strength does indeed come in many forms. I have formed deeper connections with those around me and said goodbye to the people that couldn’t show up for me. I have had time to calm my nervous system and let go of years of emotional baggage. Whilst a lot of time has been used resting, it has also been used to write and create. It allowed me time to create this Substack page and form this growing community, which I am so thankful for.

Overall, I’m really proud of myself this year. I survived!! I feel I got through it with grace. And it wasn’t because I ‘fought’ my way through. It was actually because I ‘let go’ and surrendered. I learnt to relax and to be adaptable, instead of trying to push through with old rigid behaviours.

Before this year I would have ignored what my body and mind were desperately trying to tell me. I would have let the guilt and societal pressure get the best of me. But now, instead of beating myself up for not ‘achieving societies goals’, I am trying to show myself kindness instead.

I told myself over and over again ‘You are worthy of love’, no matter what I managed to achieve each day. I allowed myself to rest and recuperate when I needed to. I listened to my body. I treated myself like I would a friend, instead of my own worst enemy.

When I first got diagnosed at the start of the year, I felt very let down by my body. I felt betrayed and dissociated from it, trying to shut down the parts that were in pain. But now I can see that is a totally unsustainable way to live. Your body really is just trying its best to survive. I’m learning that I need to work with my body, not against it, and that is what I want to bring forwards into 2025.

I want to give my body the best chance. I want to eat healthy not because I want a ‘beach ready body for summer’, but because healthy food is nourishing and essential for building a body that can experience joy and laughter and love. I want to exercise to move my body and to feel good, not to punish it for eating calories. I want to rest without guilt, because its essential, not a luxury we have to earn. I want to continue to write and to be creative, not as a way to show people my worth, but for spiritual freedom and for the pure joy of it!

Ultimately, I want to make realistic goals to make myself feel even better next year, not as a way to layer more guilt and self-hatred onto my to-do list. I know I won’t always be able to achieve the goals I want, but just knowing I’m trying my best will be good enough for me.

And if you've had a weird up and down year like me, just remember that the year may have been tough, but you were tougher! You may have experienced every emotion under the sun, but you made it through and I am incredibly proud of you (and me)! Each and every hard time you had, you survived. You kicked it's butt. Ok it may have been a fatigued tap on the butt at times, not a roundhouse kick, but it still counts!

How about you?

Do you have any goals for next year? What attitude do you want to bring into the new year and what do you want to leave behind? Was 2024 a good year to you, or are you happy to see the back of it? What did you do that made you proud of yourself? How do you celebrate New years or do you treat it like any other day? I would love to know in the comments.

Looking back, to go forwards...

Comments