Housebound is a strong, and negative, word but it is a realistic description of Katie’s life, at the moment. Her sickness has regressed to a point where she’s only awake for a few hours a day. In those precious hours, Katie pushes herself as hard as she can but finds even simple tasks, like reading, to be exhausting. With the exception of a two hour writing class, every Thursday, our home has become her world.
Katie recently went 2 months without leaving the house. The pain and exhaustion she felt was often overwhelming. As much as she hated being stuck in bed all the time, she just couldn’t do anything about it. Since then she’s been managing to get out of the house, for that 2 hour period, on Thursdays. This is exhausting for her. She generally spends the following three days in a daze, sleeping around 20 hours a day, and barely functioning when awake.
One of the newer symptoms of Katie’s condition has been extreme light sensitivity. Most of the time she lies in darkness. The curtains of our bedroom have been permanently closed for these past 4 months. To guarantee complete darkness, which is sometimes all she can manage, a face mask is always close at hand. When she has briefly left the house, she does so in thick sun glasses. The light hurts her eyes and gives her headaches which are simply unbearable. There are hundreds of other people who share Katie’s condition and experience this. Katie has had countless people get in touch, through this blog, who have spent years of their lives in complete darkness. We thank God everyday that Katie’s experience has not been as bad.
Regular reader would surely have noticed that Katie has barely been updating her blog over this time. After reading this blog post, I’m sure that you don’t need telling why. Most of the time writing has felt like scaling Everest to her. When she has been able to pen something, she focuses on homework from her writing class. Unfortunately, however, this mostly remains undone. Katie is passionate about writing. She has a real talent for it, even if I do say so myself. It has therefore been difficult for her to go so long without pursuing it.
Despite all this, her life remains full of hope. Not for one second has Katie stopped fighting. Her mental toughness over these last five months has been remarkable to see. Katie has countless reasons to despair, but she never indulges them. She smiles, she laughs and she loves. She is never bitter and is rarely ever sad. Even though she’s awake for a handful of hours a day, and she spends those hours shrouded in exhaustion and pain, she always makes the most of everything she can do.
We don’t believe that Katie will be this sick forever. We have faith that this is just a season of her life. A season that will ultimately strengthen us both. We continue to place our trust in God, who watches over us, and has a purpose for our struggles.
I’m not writing this to incite sympathy for Katie. She neither needs nor wants it. I’m writing this because it’s the reality of M.E. and Fibromyalgia and the purpose of this blog was always to tell you the truth, to raise awareness. The truth of Katie’s conditions are hard to hear, and even harder to live. But today, I want to show you how joy and hope exist in all situations. In our experience, life can never be so hard that a smile can’t be found. Darkness can never extinguish light.
Best,
Paul