About

About

Hello and welcome!

My name is Anne-Marie and I’ve created this blog to share some of the positive discoveries I’ve made along the way to living well with Ankylosing Spondylitis.

Let me be honest from the outset – I’m not living a perfect, pain free life and I do still have my share of flare ups, sleepless nights and bad days. Thankfully though, these are now becoming the exception rather than the norm, and for the most part I am enjoying my life and feeling well. And if I look across the past few years I can see a steady improvement in my levels of pain, a decrease in my reliance on meds, and an increased feeling that I am calling the shots as far as my health is concerned. There is no doubt I am slowly but surely heading in the right direction.

If you (or someone you love) has AS then I am excited you’ve found me! You are the reason I have decided to share relevant information I come across, along with my personal experiences.  I hope that this might provide hope and some practical solutions to other people who are feeling alone or otherwise struggling with this disease .

There is a distinct lack of optimism around being told we have an incurable, chronic autoimmune disease, and sadly most professional advice is limited to “keep moving, take these drugs, come back and see us when they stop working”. This is exactly what I was told following my own diagnosis 4 years ago, and they were certainly not the words of encouragement I wanted to hear. There was a basic assumption that a) this was totally out of my control b) I was simply going to get worse over time and c) I was embarking on a lifetime course of stronger (and scarier) medication.

Thankfully, over time (and the internet, for which I am forever grateful!) I have found  there is much more that can be done. There are also many others like me who are forging different paths and, through all different ways, thriving in spite of their AS. I have come across many different ideas and tactics to support my health and diminish the impact of AS on my life and I really look forward to taking you through some of these in my blog posts.

Most significant of all, I even dare to believe these days that switching the genes responsible for AS off and entering a state of remission IS possible  – in fact, I know people who are living happily in this state already! I’m certainly not there yet, but I am realistically optimistic that I will achieve this goal over the years to come and will once again enjoy the fulfilling and healthy life I was meant to have.

My quest is to learn everything I can about AS, autoimmunity, gut health, diet, natural therapies, medication and mindset. Through investigation, trial and error I am continually learning what works for my body and what doesn’t, and I already feel I understand my individual health better now than ever before.

Just a few disclaimers: It’s really important to remember that what works for me may not work for you, and vice versa. We are all unique (in spite of sharing a diagnosis) and its up to each of us to come up with a customised plan for our own health.

You will no doubt also have different ideas and goals than me in terms of the life and health you want, so bear this in mind when reading my posts. For example, my goal is to be as free of medication as possible because I know this is when I feel my best. Your goal might be to find medication that works for you and maximise its effectiveness through supporting your health in other ways.  There is no right or wrong way to do this and I hope that regardless of your definition of living well you will find helpful information and inspiration in what I share.

I also need to be clear that I am someone with AS, not a medical or natural health professional and will always endeavour to share the source of any information I share. Before embarking on any new diet, treatment or health strategy please talk to your relevant health expert and be sure this is the right step for you to take.

Please do comment or contact me, I’d love to receive your feedback and will endeavour to personally respond to all messages.

I would also love for you to become a subscriber, join my Facebook page and come along with me in my quest to live well with AS.

Warm wishes,

Anne-Marie

Save

Save


Creating a Can-Do Life

Creating a Can-Do Life

 In the weeks and months following my diagnosis I would often find myself grieving my old life.

There seemed to be so many things I could no longer enjoy because I had AS. I had always loved massages, but thanks to chronic inflammation these had become more like torture sessions. I could no longer tolerate long drives, airplane trips, sitting in a cinema, or walking on the beach or through the hills where I live. Having always been a strong and capable person, I found I could no longer lift anything without painful consequences – not heavy shopping bags, or a loaded washing basket, or boxes of work equipment in and out of my car, or my youngest child. Simple pleasures like sleeping in on Sunday morning or lying in my hammock reading a book left me in too much pain to even contemplate.

Lost in my misery, I would even find myself thinking wistfully about stuff I had never liked simply because I knew I could no longer do it! ‘Great’, I’d think to myself grumpily, ‘now I can’t abseil, or go on long four wheel driving adventures, or take up any extreme sports’. Haha – you’d probably have to know me to understand how funny that is!

Looking back, it’s a good thing I had no idea how much more my life was still set to change. About twelve months after my diagnosis I made a decision to minimise my reliance on medication and started down the road of finding natural solutions. This soon presented me with the biggest lifestyle change of all – food!

Dramatically changing my diet proved to be crucial in managing my inflammation, but for someone whose life literally revolved around food this presented a huge challenge! All of my hobbies, interests, my social life, the TV I watched, books I read, shops I browsed and even my work all centered around food. To suddenly find I couldn’t eat at standard restaurants or while travelling was a huge blow to me. I would run cooking classes and attend expensive workshops where I couldn’t taste a bite.  I catered for events and cooked for a multitude of occasions and had to simply rely on recipes, techniques and my memory of flavours, and the willingness of others to taste what I was making (I’m sure there were still many hits and misses during this time!!).  I attended five star conferences and went to top restaurants in beautiful locations where the efforts of amazing chefs were all but wasted on me. Meanwhile, those around me went into raptures about the glorious food I couldn’t eat. The fact that I was getting major relief from pain kept me motivated to continue with the diet I was on, but I can’t pretend I didn’t have a lot of moments feeling secretly sorry for myself.

Over time I struggled with the idea of missing out and being deprived  – I would sometimes say to myself at a low point “I just want my life back!”.  It was a pretty negative way to view things and I knew it wasn’t doing me any good, so at some point I sat down and gave the whole scenario some serious thought. Here I was, just over 40 years old and the life I had created for myself up to that point was slowly being eroded. In the absence of a miraculous cure, I only had one option available to me – adjust. I had to rethink life as I knew it and come up with a new approach.

To start with I wrote myself a long list of things, not of what I was doing away with but all the stuff that I CAN still enjoy and take part in (and sure, this list varies depending on how my symptoms are at any given point). Once I started writing this can-do list I kept thinking of more and more specific activities available to me: bathing at the local hot springs, sitting in the sun, re-discovering my herb garden, reading, listening to podcasts, going to the local farmers market or second hand stores, re-decorating parts of my home, socialising with friends and family, re-discovering photography and various other creative pursuits.

Feeling inspired, I added some things I’d always wanted to dabble in but had never made time for:  visiting local art shows, learning about aromatherapy and essential oils, and starting a blog (well how about that!).

There was also opportunity to rethink the whole food issue (after all, I do still eat!) and I realised there was so much joy to be found in entertaining, sourcing fruit and vegetables from road side stalls, discovering the world of tea with its amazing flavours and rituals, creating new recipes and sharing what I learned with others. True to form, this passion for creating, sharing and enjoying food has probably emerged to still be a big focus in my life, with more opportunities to adapt this aspect showing themselves as time goes by.

Another big focus has become the knowledge I’ve gained about wellness while on my journey with AS. It has enriched my life in ways I may never have come across otherwise and is a new passion of mine that develops more every day. Searching for solutions for myself has opened my eyes to so many new ways of thinking and information that will help me and my family (and others too) enjoy better overall health than we ever would have enjoyed going along the same path we had always been on.

As part of my can-do approach I make a conscious effort to remain optimistic. Regularly revisiting the Can Do list I wrote reminds me to not sink back into mourning the things I used to do, but instead to feel excitement about the new directions I am taking. Writing in a gratitude journal from time to time also boosts my feelings about how life is evolving for me and the abundance of new opportunities waiting for me.

I’m also being more thoughtful about what I say to others and am working on resisting the urge to tell people a sob-story when they notice I’m not eating dessert! Instead, if they ask I just explain how eating this way keeps me free of pain so is very worthwhile for me, which most people will immediately agree with. Similarly, if people notice me sitting out of an activity I can’t participate in and I briefly explain that my joints don’t cope with it but that there are plenty of other things I can still enjoy so I really don’t mind. The more I say these things to others, the more I believe them to be true and it really does help.

What things can you still enjoy? No matter what impact AS has had on your life I hope you can find a few things to start a can-do list of your own. It might be just a few small things to start with (watching a favourite TV show, giving your best friend a gentle hug, painting your nails your favourite colour, enjoying a few squares of dark chocolate…) but I guarantee over time your list, like mine, will being to grow.

 

Save

Save

Save