Are you a chronic illness warrior?
By that, I mean, are you the kind of person who:
- Is an advocate for or is a fundraiser for a charity supporting your illness
- Works or runs a business, even if it makes your symptoms worse
- 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-even not taking a medicine that helps your symptoms
- Says ‘I’m fine’ when friends/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; let alone meditate
If you answered yes to some of these then read on:
We certainly need advocates for all chronic illnesses and doing most of these things likely makes you an inspiration to others. However, where do you come in your list of priorities? Your choice to raise awareness for others with chronic illnesses is awesome, but if you don’t make yourself a priority; you’re no good to anyone else.
The bullet points above are the opposite behaviours to those in this diagram. I could have added many more examples, but I based it mostly on my own behaviours. In this blog post I’ll discuss my experiences, my understanding of ‘self care’ and the steps I’ve taken to try and put myself first.
Until last year I don’t think I’d really heard the term ‘self care’, now it’s fairly prevalent. I didn’t practice self care and I admit that I still revert to old behaviours occasionally. When I fell ill, my self worth plummeted and when I had to leave my teaching career; I fully lost any sense of purpose. I love helping others and raising awareness. Once I even raised money for 2 charities in the same month!
After 3 years of everyone saying that I was putting too much pressure on myself; I began to realise my self care was pretty nonexistent. Considering the severity of my symptoms; I knew this wasnt good. I was making my symptoms worse and my mental health was suffering too. You can read about a day in my life here.
About a year ago, I joined a closed Facebook group at the recommendation of a friend. This was for women who ran their own businesses; started by an amazing lady who is a coach and hypnotherapist. This is Josie’s website. She sets a theme most weeks and then does a live session discussing aspects of that theme, such as; what we do to have fun or about asking for support.
She ran a course for us to choose one thing we wanted to achieve in 2017. I started, thinking this would be about my jewellery business. However, I soon realised that everything seemed to be pointing towards choosing ‘being kind to myself’. This was the first time I truly contemplated the cost of my actions. I suddenly saw that by being kind to others, pushing myself with my business and trying to prove I was still independent; was not only bad for my health, but was affecting my self worth.
So, I set my 2017 goal as ‘being kind to myself’, which you can read about here. I underpinned this with the steps I needed to take to reach this goal and even thought about who I needed to help me achieve this. I set up a Pinterest board with related quotes and some feedback from customers. I don’t set New Year’s resolutions, but having this structured goal, was much easier for me to follow. I wrote my goals out and kept the image in my favourites on my iPhone, so I could refer to it often.
- I started a diary and only wrote 2 activities a day, so that if a friend was visiting, I only wrote one activity for my business/blog/supporting others.
- It took a while to add rest times as standard, as I already meditated. I lost my way a few months ago though, so now I write in time for meditation every day.
- I let my friends support me and a rota of lovelies now put up the positives post in our Conscious Crafties (CC) support group. It’s one thing less on my to do list, but I still write my positives on it, so keep the positive interaction with others,
- I’ve continued to build on my Pinterest board throughout the year although I needed a bit of a boost about a month ago, but am now back on track.
- The step I’ve found most difficult is resting on bad days, let alone making this the time to focus on my achievements and ways to continue my self care,
About a month ago, I realised I needed a boost to get me back on track for my goal. I still benefit massively from Josie’s group but I joined in with a group I’d been added to; run by the Anne-Louise. You can find out more about her here. She’d just started a 26 day challenge about improving self worth. This was exactly what I needed, at exactly the right time. I even received a free support call a few weeks ago. This call and the 26 day challenge has kickstarted me back into thinking about self care.
I have now added these elements to my self care regime:
- setting aside regular time to engage in positive interactions with my husband Joel, my boys and my friends.
- starting a journal to record the gems of knowledge from the amazing ladies who run these groups, who are generous enough to share their message.
- writing a ‘self care’ to do list as I process what has been said.
- writing at least 3 positives each day in my journal, so that I can reflect on my day and revisit my achievements and good feelings on those bad health days.
- 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’. This is still quite new to me and at first I could only say them in my head. The aim is to say them in the mirror.
- doing my physio exercises every day that I can. I’m adding in gentle yoga and Pilates techniques I already know, to improve my core and help me lose weight.
I haven’t updated you since my last operation, but it has given me some relief from most of my symptoms. I’ve managed to do more and have reduced my oramorph. Sadly, It’s been harder than I hoped to get over the school holidays (I knew I was doing a lot, but accepted there would be consequences). Frustratingly, I’m now a week in to a chest infection, but instead of waiting it out, I spoke to my GP when I first experienced symptoms; so this work I’ve been doing is sinking in, finally!
The results from my operation give me hope and I’m starting to plan for a future of less pain. I’m considering carefully how to merge Paprika Jewellery & Accessories and my passion for helping others. I have lots of ideas depending on how my health improves. I still have lots to learn about self care, but I know my priority must be looking after myself, so that I can give the best of myself to those I want to help.
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?
What could you do to address the balance between being a chronic illness warrior and practicing self care?