We have recently launched Wellbeing Wednesday in our Fabry community on WhatsApp. We know that living with a rare condition is tough. Some days are good, but some days aren’t! Our goal is to equip you with a ‘bag of tricks’ that you can pick and choose from when you need an extra pick-me-up.
So, each Wednesday, Lindsay from the Support and Advocacy Team will continue to share little hints and tips that we hope will support you to Live Well with Fabry. This is a recap of some of the topics covered so far.
Reframing unhelpful thoughts
You may have noticed, but our brain never really stops, there is a constant flow of thoughts and inner dialogue which can be either helpful or unhelpful. When we feel anxious, we can sometimes get caught up in negative or unhelpful thoughts which can affect the way we feel and behave, creating a vicious cycle.
Learning to take a step back, challenge the thought(s), look for evidence and learn to replace them is one of the best ways to help us deal with stress and anxiety.
Catch it, check it, change it approach:
Catch it - notice the unhelpful or negative thought, ask what am I worried about?
Check it – reflect on the thought, where is the evidence, is it true or false?
Change it – replace the thought with a more balanced one.
This approach is not about thinking everything in our lives is perfect, far from it, it’s realising that not all our unhelpful or negative thoughts about ourselves are true and that we have the power to change how we feel and behave by becoming more aware of our thoughts and how we speak to ourselves.
Dealing with difficult news
We know that getting a diagnosis like Fabry can impact every aspect of your life, that every appointment brings new anxiety and, in some cases, difficult conversations relating to disease progression. Thinking about how to navigate anxious and difficult conversations can be really helpful.
You may want to think about who you have with you during your appointments, maybe choosing a friend or family member you are able to lean on. If you would like someone from the MPS Society to Support you in clinic please give us a call and we can liaise with your specialist centre!
Get the facts and ask questions! There are no silly questions.
Think about how you need information to be presented, do you need time to digest information? Who can you go to when you have questions afterwards? Would you like to nominate a person of the medical team who you can talk to on your behalf.
You may also want to create a support circle or network. Who are your people, and what support can they offer whether it be emotional or practical?
Feel your feelings! Try not to bottle them up or put on brave face, talk to someone or reach out for help. We are just at the end of the phone.
Mindfulness
We know mindfulness isn't for everyone, but there is growing research which says that being mindful can have a positive impact on our wellbeing. Life is busy, but why not give it a go with a quick six minute mindfulness mediation. Give it try and see what you think.
Boom and Bust
Are you remembering to pace yourself? We know that energy and stamina aren’t finite, this is even more true when living with a condition like Fabry. Having a to-do list that never gets completed can feel hugely overwhelming and can lead to you running headfirst towards burnout. Here is a great link to article about Pacing by Cambridgeshire Community Services NHS Trust.
Pacing is about working within your limits, planning, and building strategies to support you in managing daily life (all the things you have to do, as well as the things you really want to do!). Pacing involves breaking down activities into chunks to make them feel more manageable and achievable.
Positive self-talk
Talk to yourself the way you would speak to your friend. Our internal voice is too often critical and negative. Can you take two minutes out of your day for some positive self-talk? Below are some statements you might want to start with, big or small it doesn’t matter, just that it’s encouraging to you.
I am pleased with…
I have achieved…
I can…
I am…
Anxiety – the bear analogy
The bear analogy for anxiety is based on the fight-or-flight response. This is a physiological reaction to threats that our bodies developed as a result of our evolutionary ancestors facing physical dangers.
When our bodies perceive a threat, adrenaline, noradrenaline and cortisol levels rise, this prepares the body to fight, run or freeze. All of these things are potentially very helpful when you’re actually being chased by a bear…less so when you’re not!
What if the threat you are facing is pain, palpitations, GI symptoms or health anxiety? What if the threat you are facing is en route to your annual Fabry review or when you get on the bus to get to work? The symptoms of increased heart rate, rising blood pressure and shaking can all be exceptionally unpleasant and are usually interpreted as a panic or anxiety attack.
So what can we do? Have a look at these resources to support you when that bear feels like it is getting closer.
We hope you find something here you can build into your daily routine to support your wellbeing.
You can find more wellbeing resources and support for looking after your mental health support here. Remember we are here for you, call our Support and Advocacy Team on 0345 389 9901 or email advocacy@mpssociety.org.uk
