Living with a chronic disease is complicated. Very complicated. Why? Well it’s not just about managing your symptoms, your medications, your endless doctors’ appointments, your sick days, your finances, you have to micro manage every part of your life to cope.
That last minute, spontaneous invitation from a friend, family member or partner sends shivers down your spine as you instantly go through a checklist in your head about what you have on tomorrow and the day after and the day after that. If you accept the invitation does that mean you will have to cancel plans in the coming days? Can I make it to work or school tomorrow? If I say yes I might have a great time, but will I pay for it tomorrow? Is it worth it?
Then there’s fitting in life’s requirements, how will I be able to manage the washing, cleaning, kids, dinner? Everything is a juggle, it’s like one of those puzzles where you slide the pieces around, up and down until it makes a picture that makes sense. If I move the cleaning from this day to then I won’t make it to dinner that night, nope lets change it to another day when I can lay on the lounge and rest for the night. If I rest then I might make it to the next event the following day, yep, that works, lock it in!
Everything is a compromise.
Everything is complicated.
Complications killed spontaneity.
And for many of us it kills the romance! Relationships are hard enough without adding in a chronic illness. Many partners find it hard to understand the disease, to understand how they can’t make the pain go away and struggle that they don’t know how to ‘fix’ it. Some of us are lucky to have amazing and supportive partners who pick up the load and help out during flare ups. Others are not so lucky and struggle to find that support and understanding.
If you are lucky enough to be blessed with being a parent then you have guilt, all the time. You beat yourself up for not being the super mum you see on TV shows and ads, for not being able to run from school to sports practice and then still bounce around the house with your kids when you get home. You’re lucky if you can muster the energy to get them fed, clean and read them a story at bedtime. Then you collapse on the lounge, re-run the day in your head and feel guilty that you didn’t do something more than what you did. But you know what, STOP! You are doing your best, the very best you can do today, and tomorrow may be different, tomorrow you may have a little window of feeling ok and you know what, seize it, laugh, smile and appreciate the little wins.
Do what YOU need to do to feel in control and enjoy the moments you can, grab hold of the moments and savour them. Don’t feel guilty, feel proud you made it through another day. As the saying goes, remember your track record for making it through even the worst days is 100%. You’re still standing (or lying on the lounge/bed) and that’s something to be proud of. You made it through another day.
Plan, know your limits, know it’s actually ok to say no sometimes (something I am still yet to master) and be gentle and kind to yourself. What would you say to a friend who told you they were feeling this way? Would you say they deserve to feel awful and beat themselves up? Nope, probably not. You’d most likely say something far more supportive and tell them to look after themselves, ask for help when they need it and be good to themselves.
So be gentle and kind to the most in need person you know, yourself. Life is complicated, remember that and remember it’s ok to follow your own path, don’t judge yourself compared to others who live pain free and disease free. This life might not be what you expected or planned for but it’s the life you have, so keep fighting, embrace the complications and find your new normal.
March is Endometriosis Awareness month so be brave, talk about your journey, be honest next time your friends ask you how you feeling, tell them how you honestly feel and be fearless, you never know who you may be helping, you are 1 in 10, you are brave, you are strong and you are an Endo Champion.
So this Saturday, 19th March whether you are attending an EndoMarch event or not, join us and the other 55 countries taking part in the EndoMarch and let the world hear our voice as one as we stand together to End The Silence.
#1in10 #endomarchaust #endoaustralia #endometriosis #endthesilence