Living with an Illness that has No Cure

“Anyone can carry his burden, however heavy, until nightfall. Anyone can do his work, however hard, for one day. Anyone can live sweetly, patiently, lovingly, purely until the sun goes down. And this is all that life really means.” — Robert Louis Stevenson

When your life is a chronic, debilitating state of illness, there are no more lovely flowers, warm visits and clean sheets as you convalesce from an acute illness.

Life now is a cold, harsh reality – like the aftermath of a tsunami where nothing makes sense anymore and the landscape of your life is so different you feel you have woken up in a nightmare of someone else’s life. Your sometimes peaceful sleep is chased away by a “broken” body – one that no longer does what your mind tells it to do.

Some days you manage to get through the day, but because of your overwhelming lack of energy, that day you may not have had the energy to wash your face, let alone wash all the other working parts. I always seem to manage to brush my teeth though. Other days, I can say it was a success because not only did I manage to shower but I also washed and dried my hair. Those days when I could do that one my own are over now and I rely on someone else to help me achieve this simple thing like washing myself and dressing. On the days that I must go to the doctor or for some test, I cannot wash myself otherwise I don’t have the energy to walk to the vehicle (portable oxygen attached) to get to the doctor.

Never did I dream that my life would end like this. Never did I dream that I would need a constant companion to wash me, dry me, dress me, change my linen or make a cup of tea for me. But that time has come and the luxury of having someone bathe and dress me allows me some energy to sew, write or do some other thing that I love to do. Gardening remains just something I stare out the window at.

The demands of my body supersede everything else. You stave off the crash as long as you can. I imagine that I still have the energy and the strength I once had and push myself so hard that I run out of energy and oxygen, more often than not landing on the floor and groaning because I can’t get the word “help” out and there is no one around to hear me anyway. I now have a panic button hanging around my neck and never go anywhere, even with my portable oxygen, without my phone. To go to the kitchen to make a cup of tea, I have to take all the things I may need if my body lets me down and I can’t get back to bed. I manage my energy as best I can. The best way for others to understand this energy thing is by looking up the spoon theory on google. It is the best way of describing what it feels like to not have enough energy to accomplish even the smallest goals. Just writing this is taking huge energy and the pain is indescribable – my arms are burning with lack of oxygen as I try to type. I keep on having to stop mid-sentence because I cannot take the pain anymore. I don’t have enough red blood cells to carry the oxygen and only have 37% lung capacity. You try to be happy with less and want, need, hope and aspire to less.

I try to live measured and predictably but I cannot even predict how I will feel in an hour. Making an arrangement to meet someone is pointless because I don’t know how I will feel and also that person may have been in contact with someone who is ill and then I cannot be in their company. Living with an almost non-existent immune system and more than one cancer is not a walk in the park, although I have been accused of pretending to be ill by my female siblings – little do they know that I pretend to be healthy so well, that I should win an Oscar Award.

It can feel like you are a prisoner of your own body when you have a chronic illness for which there is no cure. It strains the spirit and taxes the soul.

Living with purpose and trying to make something out of what you’ve got to work with calls for conscious, dogged determination not to be defeated and to get up every time you get knocked down. It forces me to dig deeper (although I think I have already hit rock bottom), try harder, be more courageous and to learn to think my way through my day without looking back and without looking forward more than an hour but at the same time finding something to do that brings me joy and gives me something to look forward to.

Some days nothing helps – no doctor, no friend, no family member can shake you out of that pain and suffering you are in. It is a red haze of hell you are living in, right here on earth. Surely death cannot be as bad as this. I have to save myself. I am the only one in this body and I am the only one who is going to die in this body – alone as I came into this world with no knowledge of what it is going to be like to stop breathing.

All things said and done, in the end, no matter how you analyze or describe it, and no matter how much help and support you have, some days, nothing seems to help – especially when there’s no cure. You feel beyond help. You must save yourself. Those who support, help and take care of you certainly help to ease the burden. I would not still be living without them. They are not taken for granted.

I live with hope and then see a doctor and come away feeling hopeless and helpless. The only thing I know is that this is not going to go away – this illness is here to stay until it takes my last breath. I continue to try to live with a spirit of grace, of acceptance, endurance and hope. Nothing lasts forever. Today, this week or even next month might be bad, BUT TOMORROW may be different. Tomorrow hold the possibility of a thousand wonderful experiences. Tomorrow will be different and even in the worst times, I still find much to be grateful for.