Self-Care for Beginners

By Dannielle Stewart

It's two a.m and I'm having the worst flare I've had in some time, the kind where my insides feel encased in barbed wire and it's as though a knife sits between my legs, walking is agony. I find a corner to sit in, clutching at my stomach, and I reach for a near by disposable heat pack, cracking it until it's hot in my hands. I don't want to leave this quiet corner, behind a closed door, but I hear the familiar chime of a call bell. You see, I'm a nurse and I'm in the middle of a night shift. I'm hiding in a store room because I don't want my colleagues to see me hurt. When that call light goes off, despite my pain, I get up smooth my dress, stuff the heat pack in my pocket and tend to my patient, pushing the pain to the back of my mind. Someone needs me, and it's my job to help them, they wouldn't know I had endometriosis or adenomyosis, I smile and hold their hand with an expression that doesn't betray the pain tearing up my insides.

An alternative title for this blog was originally "Self Care for People Who Suck At Self Care", but I thought it may have sounded a little harsh, even though that's exactly how I feel about my self care abilities...

Hi there, my name is Dannielle. I'm a registered nurse and QENDO's Support Coordinator and I am terrible at self care, a rather startling admission for a support coordinator perhaps. Both of my roles involve looking after other people, supporting them through difficult times, and giving a lot of myself for my job. They are roles where my personal problems, pains and concerns take a backseat because my focus must be my patients or clients. They are roles that I have become too good at, because while I'm excellent at taking care of others and encouraging them to put themselves first, I have found it difficult to take my own advice. However, as support coordinator, I would be remiss in my duty if I didn't tell you how important it is to engage in self care and take care of both your mental and physical health, because while I'm admittedly still working on my own self care skills, I'm pretty good at my job.

Tamer Seckin, MD, author of The Doctor Will See You Now: Recognizing and Treating Endometriosis, describes the Type E personality, an addition to the standard Type A and B, unique to endometriosis sufferers. Type E personalities can have endometriosis pain raging within them like an uncontrollable fire, and refuse to let any external signs of it show. Through the pain, their face remains neutral. I'm sure quite a few of us can relate to that. How often have we found ourselves in pain and not wanted to tell anyone, out of embarrassment, out of not wanting to explain, out of wanting to reassure those around us that we're fine? We are strong, sometimes to a fault, because we have been through so much.

In the endo and adeno community, so many of us are guilty of being too busy, or too invested in caring for others, either because of our jobs or home lives. I am bad at self care, and guilty of trying to make others happy at the expense of my own health. In the last few months I have attempted to remedy this, because anyone who knows me knows that I don't like to be bad at things, and I wanted to share this with you. It is something essential though, because the saying "you can't pour from an empty cup" could not be more true. The people you care for, either at work or at home, cannot benefit from your stupendous skills if you're burnt out. Burn out and compassion fatigue can catch anyone in a caring role by surprise, gradually grating on us until we realise that we have nothing left to give and our motivation to care and provide is in short supply. For anyone at all, chronic illness can lead to a fatigue and burnout that can influence one's whole life and one's ability to function in day to day activities. That's why self care is so important, self care is not selfish, it's an essential part of being human.

The following are my favourite self care tips, ones learnt through sometimes harsh experience, and I hope they may be of help to my fellow endo and adeno sisters out there! Remember, if you're struggling with your endo or adeno, the QENDO Support Line is available for you! If you need further help check in with your GP or specialist, take care of you.

Find Your 30 Second Dance Party

One of my favourite self care tips, shared with me by numerous endo health professionals from pain specialists to physiotherapists to yoga instructors, is to find your favourite physical activity. Depending on where you are in your endo or adeno journey, a full on workout can be a bit of an ask. While I love spin class, sometimes I'm way too sore or tired for it. On those days I favour some yin yoga (especially if it's taught by QENDO yogi Meredith East-Powell!) or a walk at Kangaroo Point. Exercise is a great way to wind down after a long day, to celebrate the things your body can do, rather than focusing on what it cannot. It can be an opportunity to clear your mind, to set goals, and foster a sense of achievement. It doesn't matter what form, anything to get those feel good endorphins going and distract a busy mind. If all else fails, break out the emergency mood booster - 30 second dance party. Meredith and Christina of Grey's Anatomy helped popularised "dancing it out" for any situation - for mental health, in celebration, when you need to let something go - the opportunities are endless. Put on your favourite song and dance like a complete idiot, it's fun, I promise. It's something you can do even when you're hurting, because it's just one short burst of activity - commitment free! The QENDO community is full of allied health professionals who can help you with finding an activity that suits your current situation.

Rediscover "Me Time"

If you find your day so filled with tasks that you cannot remember the last time you sat and did something just for you, it's time to rediscover me time. Never let anyone convince you that taking time to do something you enjoy, just for you, is selfish. It doesn't have to be anything huge or complicated, or expensive! What makes you happy? A favourite book, a cup of tea, writing, watching Netflix without anyone else's commentary? Whatever it is, make time in your schedule to do it, make it something to look forward to. If you're not sure what to do for "me time", because maybe you've never made time for it, experiment with something new. Before I was a nurse I had a degree in English Literature, and so I have always loved reading, any genre, and so it's essential for me that I make time to enjoy a good book. I learnt throughout my first year as a nurse that me time was essential, because I found myself with so little of it and feeling guilty for wanting it. It was harder than I realised to come to terms with the fact that I needed time to be with myself, to enjoy my own company, and take away the pressure of social interaction. Doing so made me better able to cope with the demands of my job and enjoy my days off. Take the time to find what works for you. Some suggestions from the QENDO committee and their wide range of interests: pottery, karaoke, Park Run, Netflix, arts and crafts, and cooking.

Listen to Your Body

It takes a great deal of self-reflection and honesty with yourself to take a step back and say: I'm not okay, and I cannot handle this right now. Whether it's work or a social event, sometimes you need to sit it out because pain has got the better of you. It's okay to take that sick day, reschedule that meet up, or say no to an event you know you cannot manage. My opening story about being overwhelmed by pain at work is not an isolated incident, and while I can generally maintain my ability to do my job under a great deal of pain, there are certainly times where I should have stepped back and said no. Just because I was able to do my job in pain, doesn't mean that it wasn't exhausting and that I didn't spend the rest of my day in bed. I wish I could give you this advice from a place where I too have taken it, but I can't say that. I hear my body, loudly, but I still need to work on listening to it. It can be hard to say no to things, even when you're exhausted, because you're worried how others may perceive you, or you're worried about missing out. It's hard, but it's necessary, because you cannot hope to work or enjoy if your symptoms are so overwhelming. Allow yourself the time to heal, and be kind to yourself.

Find Your Tribe

The most essential part of my self care journey has been finding other people who understand what I've been through and surrounding myself with their positivity and love. In good times they help me to achieve my goals and encourage me, and in times of pain or struggle they are my compassionate ear, always understanding and never judging. Finding your tribe can help transform your endo or adeno experience, because you'll find yourself among friends who understand your experience and encourage your self care goals. Finding QENDO has helped me practice self care, because I have been able to see how my fellow endosisters practice self care, as well as making them part of mine. EndoMeets are a self care staple for me now - a cup of coffee, a delicious breakfast, and meeting new people and hearing about their endo journey - it's one of my favourite forms of self care! Helping others is a short cut to happiness, and helping your fellow endo sisters is a fantastic way to give back and feel good. Message us at QENDO if you want to get involved, we'd love to have you in our tribe!

Self care shouldn't feel like a chore, it should be something just for you, to take care of yourself, because you deserve it. Chronic illness can take so much out of you, it's only right you take the time to switch off and refuel. QENDO is always here to help you do just that. Follow us on social media to be part of the endometriosis community, find events near you, and be inspired by the amazing women that make up our community.

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