Are you a chronic illness warrior? Are you the kind of person who:

  • Raises awareness and/or money for a charity supporting your, or a loved one’s illness?
  • Has lists of things to do or achieve because you want everything done now?
  • Is there for your friends who need support, even on your worst days?
  • Struggles to accept help, maybe even not taking a medicine that prescribed to help you?
  • Says ‘I’m fine’ when friends and family ask how you are, even when you feel awful
  • Has to be busy doing things that aren’t important, rather than prioritising?
  • Doesn’t plan in any time to rest or even just sit still?

If you’re still reading this, then I expect that you’re an amazing chronic illness warrior but you may be considering whether you’re looking after yourself in the best way that you can. It’s vital we have representatives, like you, who have (or care for someone with) chronic illnesses. You show the world that we can be independent and run our own businesses, but where are do we fit in our own list of priorities?

The bullet points above are carefully worded so you can compare them to the diagram below. They describe how I was a year ago: I had been incredibly poorly for nearly three years and bed-bound for over two of those. I’d just recovered from brain surgery and knew I needed more skull surgery. I knew that I couldn’t manage all this and run my own Paprika jewellery business.

Self Care diagram

I made a choice to run my own business but, like many others, I struggled to put my own physical and mental health first. Do any of the words in this diagram stand out to you? Are there words that you read and know you’ve got it covered? Is there a word that makes you feel ‘icky’? Although this is about my journey, I’d love to hear your thoughts.

After three years of everyone telling me that I was putting too much pressure on myself, I actively began to listen. I realised I’d never treat anyone the way I was treating myself. I loved my business and I loved raising awareness for Idiopathic Intracranial Hypertension (the rare brain disease I have) and helping others. However, I was making my symptoms worse, almost disregarding my mental wellbeing and was being unfair to my husband and two boys. When I had to leave the teaching career I’d loved, I was lost. I was lucky to be a Craftie and have a sense of purpose, but I needed to find a balance and so my self-care journey began.

I don’t think I’d really heard the term ‘self-care’ in October 2016, but now it’s fairly prevalent. I already meditated regularly, ate healthily and understood mindfulness. Self-care is so much more though. I’d been so busy trying to prove I was ok, I’d forgotten to slow down and I certainly hadn’t accepted (my ‘icky’ word) my situation.

Around the same time, I’d joined an amazing group of women who run their own businesses. We share expertise and support each other. It’s run by Josie from Worry Free who is brilliant at what she does. We worked on our goals for 2018 and it became, unexpectedly, apparent that I needed to focus on being kind to myself.

Be kinder to yourself and let your kindness flood the world

Josie structured time to create a plan and the steps I needed to achieve this. As an organiser and list fan, having a structured goal plan was much easier to follow. I started a Pinterest vision board and created an image to keep on my phone, so I could refer to my goals often. The board I created then has developed over the year, so it was easy to revisit my goals and add new quotes.

Actions I’ve taken to stay focused on my self-care journey:

  • I write 2 activities per day in my diary, to help me pace myself.
  • I make sure I engage in positive interaction every day. I chat to my boys when they get home and always (brain-fog permitting) ask my husband how his day has been.
  • Although it took a while to actively add rest time, I plan meditation in my diary each day.
  • I still find completely resting on bad days hard, especially when it’s a long flare, but I have started journaling to help.
  • I record three positives at the end of each day. I watch self-care videos and engage in challenges, record my thoughts and plan how to move on.
  • I’ve recently started using affirmations to increase my self-worth. These are short, positive statements that you repeat out loud to yourself or write down repeatedly. For example, ‘I’ve got this’ or ‘I am beautiful’. The aim is to eventually say them in the mirror.
  • I’m doing my physio exercises every day that I can, and I have started adding in gentle yoga and pilates techniques to counteract being in bed all the time.

Following some improvement in all my symptoms after my last operation, I now have hope that one day I will be able to spend more time out of bed. This has enabled me to think about my passions and how to merge these with my jewellery business, depending on how much I progress. As my treatment is experimental, my prognosis is unknown. But I know I need to help people in whatever I do, and I will be able to do that as long as I always prioritise self-care.

Are you a chronic illness warrior? If so, I’d love to hear your thoughts about this.

Are you able to ask for support? Can you prioritise self-care above all the amazing things you do? Do you engage in positive interactions with others? Do you have an ‘icky’ word?

What could you do to address the balance between being a chronic illness warrior and practising self-care?

Published in Chronic Illness, Intracranial Hypertension