If you have a disabling chronic illness, the little things like having a clean house, or wearing high heels, does not matter as much as it did before; your life is about getting to your medical appointments, taking medication, resting, supportive therapies and arguing with your healthcare providers for the best care. And if you're like me, I spend most of my life in pyjamas. It is all about what you can do, and seeking comfort.
I have had lupus and myositis for years, but it is only in the last few years that I have become increasingly debilitated by them. The house, always used to be clean; every day I would scrub it clean from top-to-bottom and everything would be clean, shiny and orderly. It used to bother me, because I was fed up of spending my life in bed and watching the world carry on without me. I am currently bedridden and my personal life is a huge tangled mess, I am anxious, broke and have recently lost some dear friends. I have new worrying symptoms developing and I cannot get the help I need from the very people who are meant to help me. Things do not look good, but it is not the end of the world.
"As for me, I will always have hope" ~ Psalm 71:14
A few years ago, I could not have coped with all that; it would have broken me. But in the last few years, I have had a lot of time to think and have learned much; that there are far more important things in life than having a clean house and beautiful shoes and most importantly, that there is always hope, no matter what. No matter how close you feel to giving up, you will never give up. Not now, not ever. You are much stronger than you realise. Of course you are strong; no-one else in our position could fight as hard as we do. We fight for our lives and no matter how close we come to the edge, we do not slip over it. Everyday, I wake up feeling lucky to be alive. I see the innocent birds chirruping happily on the naked black branches through the windows, fully immersed in life and survival. They treasure every single second of life. They do not worry about dying, but they know that they must survive and stay alive for as long as they can.
And that is what we do, we survive. That is all we can do, regardless of whether or not the house is clean, or if we live in our PJs.
Survival is not just about being strong and winning one battle after another, it is also about accepting both the good and bad days, and accepting that you will get days where you do not feel so strong. It does not mean that we are weak, or that we are failures. The bad days make those good days so much more special, and when we overcome those bad days, we get stronger each time. Survival is also about accepting yourself for who you are, and not berating yourself for being what you are not.
As Dr Seuss said "Today you are You, that is truer than true. There is no one alive who is Youer than You.”
Whenever you feel like you cannot cope, or you feel like you're about to give up, place your hand over your heart. With each heart beat, you get that little bit more stronger each time. You are a survivor.
Most importantly, you are alive and that heart beating under your hand is your purpose.
