Posts have been tough to write lately. I am not in the mood to re-start my telling of Kate’s Story. I am dealing with enough ‘of the moment’ medical drama. I also don’t feel verbose let alone coherent and it is hard to be wordy when one is very tired. The stress, worry and lack of sleep of the past few weeks…months has put me into a fog. The stretches between hospital and home seem to meld with one another as Kate has never really recovered to her ‘baseline’ since September.
The Fog is hard to describe, it almost feels like those early weeks of new parenthood with your baby at home and absolutely no sleep. My fog also has the stress and worry about Kate, and the result is an almost comically absent short-term memory, moodiness, and a lack of consistent clear thinking in my everyday life. It’s a horrible feeling, heavy-lidded eyes, sallow skin, unsettled stomach, inability to focus or attend to the things that I should be focussing on to keep my family’s life running smoothly.
The fog also affects my social filter. It is harder to return phone calls and email, or to have conversations, and to connect to the people in my life who I want to have conversations with. I find that things that should be important and grab my attention don’t. I am annoyed by the mundane. It’s only the immediate and the absolutely important that I can attend to, and even then I need to be sure I check myself with how I am receiving and sending information.
Even my running, when I can get to it – what I rely on for me, to reenergize me to keep me going mentally and physically – isn’t cutting through the fog. And that is hard. My endorphins are my drug of choice for coping – all natural and organic – and while they are helping me cope, I am taking my good sweet time to recover and my energy and desire to run is low.
I know how to address the fog. I am an intelligent adult who can lay out a plan which includes proper nutrition, adequate hydration, good sleep, minimizing stress, reducing tasks for the short-term – but I feel like I need a caregiver for myself to come and implement the plan. It feels exhausting to nurse myself back to a state where I feel poised. I am so tired, that is hard to do the things that are good and right for me to get me back on track. (Drink a glass of water? It just seems to take so much energy to do it). I wonder if someone can be hired to coach you back (I think that is called a therapist 🙂 Or maybe it’s a ‘mom nanny’ I need. Someone to look after my needs. I imagine many – maybe all – caregivers of chronically unwell children feel this way often. What do they call this state? What do they do to feel strong and ready for the challenge again?
What I fear most about circling in the fog is that I won’t adequately recover my reserves in time for Kate’s next episode. They are frequent and aggressive and the in-between recovery time is also very difficult. A tired, irritable, ataxic Kate is hard to care for when the caregiver is still trying to recover herself, and I dread having to return to CHEO already feeling exhausted.
I dream of deserted tropical islands where there is no fog, only beautiful blue skies and sunshine. Where I can laze on a beach wriggling my toes in the sand, or lazily stroll along the shoreline with not a care in the world.
I imagine being there for a least a month. I clearly need a better plan.
This morning I ran with the girls, trying to get back to the things that I know work for me. I walked out the door, and guess what? It was the foggiest morning I have ever seen. How ironic.